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.

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 family caregivers of patients with terminal cancer.

PURPOSE: The burden of serving as a caregiver is known to impair quality of life (QOL) and mental health caregivers of cancer patients. However, few studies focused on the caregivers of terminal cancer patients. Furthermore, none has compared them with those of general population. METHODS: We surveyed the family caregivers of terminal cancer patients who received palliative care services in Korea. Control individuals were selected from participants in the first round of the fourth Korea National Health and Nutrition Examination Survey and were matched with family caregivers using the propensity score method to optimize our comparative analysis. RESULTS: Health-related QOL was significantly lower in the caregiver group than in the controls. Caregivers experienced more frequent episodes of depression during the previous year than did controls (36.3% vs. 12.4%, P < 0.0001). Caregiver burden, such as "impact on health," "financial problems," and "lack of family support" had a negative influence on the health-related QOL and mental health. However, "disrupted schedule" had a positive influence on the QOL and mental health. DISCUSSION: Our results show that the family caregivers of patients with terminal cancer experience mental health problems and deterioration of health-related QOL. Culturally appropriate caregiver support programs are needed to decrease the impact of caregiving on the QOL and mental health of family caregivers in Korea.

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.

Knowledge, attitudes, and practice on second primary cancer screening among cancer survivors: a qualitative study.

OBJECTIVE: The goal of this study was to examine the knowledge, attitude, and practice on second cancer screening among cancer survivors. METHODS: Three focus group interviews were conducted with thirteen disease-free stomach, colorectal, breast and thyroid cancer survivors. Recurrent issues were identified and then placed into thematic categories. RESULTS: None of the study participants had heard SPC, and they could not differentiate SPC from 'recurrence' or 'metastasis.' Survivors believed that they had been cured, and they were not aware of their increased risk of SPC. Although they had high awareness of cancer screening, they could not make a distinction between 'cancer screening' and 'routine surveillance test' after cancer treatment. Survivors said that they would have had the screening for SPC if they had known about it. They preferred physicians as the most reliable source for screening information. CONCLUSION: Cancer survivors had limited knowledge about SPC, and lack of information was the main barrier for SPC screening. PRACTICE IMPLICATIONS: An educational intervention would help cancer survivors to understand their risk of SPC and the needs of screening after the first cancer.

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.