Determinants of family satisfaction with inpatient palliative care in Korea.

OBJECTIVE: We aimed to identify which structures and processes of care are key determinants of overall satisfaction with palliative care. METHODS: A nationwide, multicentre, cross-sectional questionnaire survey was conducted with 501 bereaved family members of terminal cancer patients (effective response rate: 20.9 percent). Structures and processes were evaluated using the Care Evaluation Scale (CES). RESULTS: In univariate analyses, all domains of the CES were significantly associated with overall satisfaction with care. In multivariate analyses, the domains of physical care by physician, physical care by nurse, environment, and coordination positively influenced overall satisfaction. After case-mix adjustment, physical care by nurse, age of patient, and lower education level of bereaved family member remained as significant determinants. CONCLUSION: Our finding that nursing is the most critical determinant of overall satisfaction within many structure and process domains has an important implication for clinical quality improvement and resource allocation.

Measuring the structure and process of end-of-life care in Korea: validation of the Korean version of the Care Evaluation Scale (CES).

CONTEXT: A reliable and valid measure of structure and process of end-of-life care is important for improving the outcomes of care. OBJECTIVES: This study examined the validity and reliability of the Korean version of Care Evaluation Scale (CES), which was developed in Japan to evaluate structure and process of palliative care from the perspective of bereaved family members. METHODS: Standard forward-backward translation and a pilot test were conducted. A multicenter cross-sectional survey was conducted with bereaved family members (n=501) of patients who had died from cancer two to six months before the study. Descriptive analyses were performed. The reliability of the CES was tested by Cronbach's alpha. The dimensional structure was assessed using confirmatory factor analyses. Concurrent and discriminant validity were tested by correlation with the overall satisfaction with care, patient's overall quality of life (QoL), and family member's own QoL as measured by the EQ-5D. RESULTS: Participants could complete the CES readily, with low missing response rates. Cronbach's alpha for internal consistency was 0.93 overall, and ranged from 0.88 to 0.94 for subdomains. The hypothesized 10 subscale model of the CES appeared to fit the data (goodness-of-fit index=0.854). The overall score of the CES moderately correlated with overall satisfaction with care (r=0.54, P<0.001), more weakly correlated with the patient's QoL (r=0.32, P<0.001), but did not correlate with the family member's QoL (r=0.03, P=0.548). CONCLUSION: The CES was found to be a reliable and a valid measure of the necessity for improvement in the structure and process of end-of-life care from bereaved family members' perspectives.

Oncologists experience with second primary cancer screening: current practices and barriers and potential solutions.

OBJECTIVES: Screening for second primary cancer (SPC) is one of the key components of cancer survivorship care. The aim of the present study was to explore oncologists' experience with promoting second primary cancer screening. METHODS: Two focus group interviews were conducted with 12 oncologists of diverse backgrounds. Recurrent issues were identified and placed into thematic categories. RESULTS: Most of the oncologists did not consider SPC screening promotion as their responsibility and did not cover it in routine care. All of the study participants had experience with unexpected SPC cases, and they were under emotional tress. There was no systematic manner of providing SPC screening. Oncologists usually prescribe SPC screening in response to patients' requests, and there was no active promotion of SPC screening. Short consultation time, limited knowledge about cancer screening, no established guideline for SPC screening, and disagreement with patients about oncologists' roles were major barriers to its promotion. An institution-based shared care model was suggested as a potential solution for promoting SPC screening given current oncology practices in Korea. CONCLUSION: Oncologists could not effectively deal with the occurrence of SPC, and they were not actively promoting SPC screening. Lack of knowledge, limited health care resources, and no established guidelines were major barriers for promoting SPC screening to cancer survivors. More active involvement of oncologists and a systematic approach such as shared-care models would be necessary for promoting SPC screening considering increasing number of cancer survivors who are vulnerable.

Determinants of the burden and positivity of family caregivers of terminally ill cancer patients in Korea.

OBJECTIVE: Caregivers may experience positive or negative feelings about their role. The study investigated the determinants of the burden and positivity of family caregivers of Korean terminal cancer patients. METHODS: A multicenter cross-sectional survey was conducted with 139 family caregivers. Determinants of caregiver's burden and positivity were assessed by the Caregiver Reaction Assessment Scale and by three questions based on a previous study, respectively. Two separate hierarchical multiple regression models were used. RESULTS: Each domain of the caregiver's burden and positivity was explained by different factors, with the total explained variance ranging between 14.4-33.6% and 2.6-18.3%, respectively. Caregivers who were unmarried, less educated, and/or had low incomes were more likely to be negatively affected, while those who shared caregiving responsibilities were less prone to negative consequences. Caregivers who were male, religious practitioners, and who perceived a higher burden of schedule disruptions were more likely to have a positive perception of their role, while those who perceived a lack of family support were less likely. CONCLUSIONS: Our results highlight the importance of sharing the caregiving burden with the other family members. Organizing a family meeting can provide an opportunity for other family members to acknowledge the feelings and reactions of the primary caregivers, and can prompt the sharing of caregiving responsibilities.

Addressing the religious and spiritual needs of dying patients by healthcare staff in Korea: patient perspectives in a multi-religious Asian country.

OBJECTIVE: We investigated how patients' spiritual and religious needs are addressed by healthcare staff in inpatient palliative care centers in Korea, a multi-religious country. METHODS: We performed a cross-sectional, multicenter survey of terminal cancer patients in inpatient palliative care centers. RESULTS: Approximately half (50.5%) of the patients reported that their spiritual and religious needs were addressed by healthcare staff. Patients whose needs were addressed reported better quality of life (QoL), as measured using the European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care, than patients whose needs were not addressed (p<0.05), although these groups did not differ when measured using the Comprehensive QoL Scale. Patients with a religious affiliation [adjusted odds ratio (aOR), 2.38; 95% confidence interval (CI), 0.70-8.05], those who were admitted to a religious palliative care center (aOR, 2.61; 95% CI, 0.86-7.96), and those whose religious affiliation was the same as that of the palliative care center (aOR, 2.42; 95% CI, 0.96-6.07) tended to have their spiritual and religious needs addressed, although not statistically significant. CONCLUSIONS: Although patients whose spiritual and religious needs were addressed by healthcare staff showed significantly better QoL, such needs were not addressed in a significant proportion of patients, especially those who were not religious or were admitted to non-religious palliative care centers. Strategies should be developed to ensure that spiritual care is provided to all patients with terminal cancer, regardless of the religious background of the patient.

Is patient autonomy a critical determinant of quality of life in Korea? End-of-life decision making from the perspective of the patient.

PURPOSE: We aimed to investigate the current practice of the involvement in decision making from the perspectives of terminal cancer patients, and to explore its possible associations with quality of life and quality of death in Korea. METHODS: A multi-center, cross-sectional survey was performed on 93 terminal cancer patients. The questionnaire solicited their opinions regarding participation in treatment decision making, as well as quality of life (European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire for Palliative Care) and quality of death (Good Death Inventory-Patient Version). RESULTS: A total of 78.5% of the patients had awareness of their terminal status, while 21.5% did not; 42.4% stated that they knew their condition and shared the decision-making responsibility with the medical staff and their family, while 21.7% made decisions on their own, and 35.9% left the decision-making responsibility to others. Patients who were aware of their illness and who actively participated in the decision making did not score higher than others on outcome measures of quality of life and quality of death. Moreover, the former even showed lower scores in some domains, including the 'physical and psychological comfort' (4.99 versus 5.61, p = 0.03), 'environmental comfort' (5.51 versus 6.04, p = 0.08), and 'emotional functioning' (55.70 versus 71.01, p = 0.06). CONCLUSION: in Korea, patient autonomy is not a universally accepted value from the perspectives of terminal cancer patients, nor is patient involvement in decision making always conducive to high quality of life or quality of death. The level of information and the pace at which it is provided should be tailored to each individual's ability, preference, need, and culture.

Quality of life and mental health in the bereaved family members of patients with terminal cancer.

OBJECTIVE: This study specifically aimed to compare quality of life (QOL) and mental health in bereaved family members of patients with cancer with that of the general population and to examine factors associated with QOL and mental health in this population. DESIGN: A nationwide multicenter, cross-sectional survey was administered to the bereaved family members of patients with terminal cancer. SETTING: Thirty-three palliative care centers designated by the Ministry of Health and Welfare participated in this study. PARTICIPANTS: The participants in this study were 501 bereaved family members of patients with terminal cancer and matched control individuals from the Korean National Health and Nutrition Examination Survey. MEASUREMENT: EQ-5D and several questions used in Korean National Health And Nutrition Examination Survey were used in to measure health-related QOL and mental health. RESULTS: Health-related QOL, as determined by EQ-5D, was significantly lower in bereaved family members than in controls (0.88 ± 0.20 vs 0.93 ± 0.13, p = 0.002). Bereaved family members experienced more frequent episodes of depression (33.1% vs 12.5%, p < 0.001) and suicidal thoughts (31.4% vs 16.4%, p < 0.001) during the previous year than did controls. Female sex, lower income, spousal relationship, and longer duration of survival after palliative care referral were negatively correlated with health-related QOL. Younger age and higher mental burden of caregiving were associated with a higher risk of impaired mental health. DISCUSSION: Our results confirm that bereaved family members of patients with cancer have lower health-related QOL and mental health than the general population. Healthcare providers should focus more attention on this vulnerable group, and various support programs should be developed to improve their health-related QOL.

Variations in process and outcome in inpatient palliative care services in Korea.

PURPOSES: Hospice programs in Korea have been largely based on volunteer activity, religious services, or social services. Recent government policy of designating medically based inpatient palliative care services and per diem payment system made it necessary to monitor the quality of these services. We examined the variation in the process and outcomes of palliative care services, using 2009 data obtained from the Korean Terminal Cancer Patient Information System. METHODS: Data were collected from 3,867 patients with terminal cancer who were registered in 34 inpatient palliative care centers designated by the Ministry of Health and Welfare. We used the mean length of stay and the subsequent place of care as process indicators, and change in average pain score as an outcome indicator. The data were analyzed using descriptive statistics, and analysis of covariance for the case-mix adjustment. RESULTS: There were considerable variations among services with regards to the mean length of stay (i.e., 10.5 to 32.6 days for each admission) and subsequent place of care (i.e., 39.8% to 92.6% ended in death at the first admission), even after stratification by service level. The mean change in average pain score varied from -1.48 to 2.16, and remained significant after case-mix adjustment. CONCLUSION: We found considerable variations among palliative care services with regard to the mean length of stay, subsequent place of care, and change in average pain score. Continued assessment of the variations in process and outcomes will assist in developing the national benchmarking system and the evaluation of the government policy.

What is the best practical survey method for the comparative assessment of palliative care services: results from a national quality assessment project in Korea.

CONTEXT: There is an increasing need for the comparative assessment of palliative care services; however, few systematic empirical studies have been performed to determine the most feasible, representative, efficient survey method. OBJECTIVES: To investigate the feasibility, representativeness, and efficiency of several survey methods. METHODS: This study was performed as a part of a national initiative to develop a system to evaluate the quality of palliative care services. Three separate but related surveys of patients, caregivers, and bereaved family members were conducted. These surveys were designed to simulate an independent assessment in a nationwide quality evaluation project. RESULTS: The effective response rates for the patient, caregiver, and bereavement surveys were 30.4% (105 of 344), 46.5% (160 of 344), and 20.9% (501 of 2398), respectively. Subjects who responded to the patient and caregiver surveys were likely to have better physical and mental conditions, whereas subjects who responded to the bereaved family survey did not differ significantly from nonrespondents in regard to patient characteristics, except for a small difference in patient gender (females: 47.2% vs. 41.7%, P=0.028). The average number of responses per institution was 3.2, 4.8, and 15.2, respectively. The cost of the patient and caregiver surveys was much higher than the cost of the bereaved family member survey. CONCLUSION: There were significant differences between the three methods. Despite the low response rate, our findings suggest that the bereaved family member survey has strengths in terms of feasibility and efficiency, and could be considered as a practical option for the comparative assessment of palliative care services by an independent body.

Measuring comprehensive outcomes in palliative care: validation of the Korean version of the Good Death Inventory.

CONTEXT: No systematic or comprehensive attempts have yet been made to assess quality of death as an indicator of palliative care outcomes in Korea, and no validated instruments exist for the assessment of a good death in Koreans. OBJECTIVES: This study examined the validity and reliability of the Korean version of the Good Death Inventory (GDI), which was developed in Japan to evaluate the quality of death from the perspective of bereaved family members. METHODS: Forward and backward translations and a pilot test were conducted. In a multicenter cross-sectional survey, a questionnaire packet, including the GDI, overall quality of life during the last week, and overall satisfaction with care, was mailed to bereaved family members (n=501) of patients who had died from cancer two to six months before the study. Descriptive analyses were performed, including response rate, mean, median, skewness, and kurtosis for each item. The reliability of the GDI was tested by Cronbach's alpha. The dimensional structure was assessed using confirmatory factor analyses. Concurrent validity was tested by correlation with the overall quality of life and overall satisfaction with care. RESULTS: Participants were able to complete the GDI, and the compliance rates were satisfactory. Cronbach's alpha coefficient for internal consistency was 0.93 overall and ranged from 0.69 to 0.94 for subdomains. The hypothesized 18-factor model of a good death appeared to fit the data (goodness of fit index [GFI]=0.964; adjusted GFI index=0.960; normal fit index=0.952). The overall scores on the GDI correlated with patients' quality of life (0.56; P<0.001) and overall satisfaction with care (0.44; P<0.001). CONCLUSION: The Korean version of the GDI is a reliable and valid measure of the comprehensive outcomes of palliative care from the perspective of bereaved Korean family members.

Late referral to palliative care services in Korea.

CONTEXT: Although timely referral to palliative care services can help improve quality of life by minimizing patient and family suffering during a life-threatening illness, it remains unclear whether patients in Korea who suffer from advanced cancer are referred to palliative care services in a timely manner. OBJECTIVES: We aimed to investigate the timeliness of patient referral to palliative care services in Korea by examining the duration of survival after enrollment and identify the factors contributing to earlier or later referral. METHODS: Patient- and episode-level data were collected from 3867 terminal cancer patients, who were registered in 34 inpatient palliative care services designated by the Ministry of Health, Welfare, and Family Affairs. Cox proportional hazard models were used to determine factors associated with the duration of survival after enrollment in palliative care services. RESULTS: The median duration of survival after enrollment in palliative care services was 18 days. Male sex, liver cancer diagnosis, poor performance status, being covered by National Health Insurance, and being married were significantly associated with shorter duration of survival after enrollment, whereas a prostate cancer diagnosis was associated with longer survival. CONCLUSION: Korean terminal cancer patients are referred to palliative care very late, and the timing appears to be influenced by some socioeconomic and medical factors. Interventions, such as physician education and establishing palliative care teams, are required to promote earlier referrals in Korea.

Cross-cultural application of the Korean version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care.

CONTEXT: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 15-Palliative Care (EORTC QLQ-C15-PAL) is a shortened version of the EORTC QLQ-C30, developed for use in advanced cancer patients. OBJECTIVES: We evaluated the psychometric properties of the Korean version of the EORTC QLQ-C15-PAL to determine if this tool can be used to evaluate Korean patients with cancer who receive palliative care. METHODS: A multicenter, cross-sectional survey was performed in palliative care units and hospices in Korea from September to October 2009. A total of 102 patients with cancer completed the questionnaires that included the EORTC QLQ-C15-PAL. RESULTS: The compliance rate was high, with the missing rate for each item ranging from 0% to 7.8% (mean 3.1%). A multitrait scaling analysis revealed good convergent and discriminant validity, with only three scaling errors. The Cronbach's alpha coefficients ranged from 0.65 to 0.89. The questionnaire discriminated among patient subgroups with different clinical profiles (e.g., performance status and degree of oral intake), thereby demonstrating the clinical validity of this tool. CONCLUSION: Our findings indicate that the Korean version of the EORTC QLQ-C15-PAL is a reliable and valid instrument with regard to its psychometric properties. This tool is suitable for measuring quality of life, particularly with regard to physical aspects, in Korean cancer patients who receive palliative care.