Economic Burden and Quality of Life of Hepatocellular Carcinoma in Greater China: A Systematic Review.

Background: Hepatocellular carcinoma (HCC) accounts for more than 85%-90% of primary liver cancer globally, and approximately 45% of deaths from HCC occur in greater China. This disease poses a significant economic burden for patients, payers and society and significantly affects patients' quality of life (QoL). However, such impact of HCC in greater China has not been well characterized. This review was conducted to analyze the current evidence about the economic and humanistic impact of HCC in greater China for informing national disease management and identifying clinical gaps yet to be resolved. Methods: A systematic search literature using seven databases (Web of Science, PubMed, Medline, Cochrane Central, China National Knowledge Infrastructure, Wanfang, and Weipu) was performed to identify interventional and observational studies that reported the impact of HCC on cost or QoL and published before April 6, 2021. The focus population included adult patients with HCC in greater China. This review excluded any studies that focused on any specific treatment. Study quality was assessed using the Effective Public Health Practice Project tool. Results: Of 39,930 studies retrieved, 27 were deemed eligible for inclusion. The methodologies, perspectives and data sources used in studies were heterogeneous. In greater China, while few studies reported the health expenditures of HCC patients and investigations about economic burden at national level was lacking, the significant economic impact of HCC on patients and their families had been reported. Health-related costs increased as the disease deteriorated. Additionally, HCC also has a negative impact on the QoL of patients, mostly in terms of physical, cognitive, social functioning and severe symptoms. Conclusions: HCC has brought significant economic and QoL burden to patients in greater China. Both physical and psychological factors predicted QoL in patients with HCC in greater China. Future studies should explore the disease-related economic effects on Chinese patients and their families, the effects of physical and psychological factors on QoL and the relationships of physical and psychological factors in the region.Systematic Review Registration: www.crd.york.ac.uk/prospero/display_record.php?RecordID=278421, PROSPERO: CRD42021278421.

The impact of hepatocellular carcinoma diagnosis on patients' health-related quality of life.

BACKGROUND: Patients with hepatocellular cancer (HCC) are known to have worse health-related quality of life (HRQL) than the general population. However, the change in HRQL from before the diagnosis to after diagnosis remains unknown and is difficult to estimate. We aimed to compare HCC cases with matched controls to evaluate the differences in change in HRQL from before to after HCC diagnosis. METHODS: We performed propensity score-matched analysis using the self-reported HRQL data from the Surveillance, Epidemiology, and End Results registries (SEER) data linked with Medicare Health Outcomes Survey (MHOS) data (1998-2014). Cases were selected as Medicare beneficiaries (aged ≥65 years) who were diagnosed with HCC between their baseline assessment and follow-up assessment. Matched controls were selected from the same data resource and the same time period to include subjects without cancer diagnosis by propensity scores. HRQL was assessed using the Medical Outcomes Study Short Form-36 (SF-36). RESULTS: The study included 62 subjects who developed HCC and 365 matched controls. Compared to their baseline HRQL scores, after diagnosis of HCC, subjects were more likely to report declines in scores related to the mental component of HRQL. When stratified by time since diagnosis, mental component remained significantly lower as the disease advanced. In contrast, only general health aspects of physical health worsened after HCC diagnosis. CONCLUSIONS: Diagnosis of HCC has a profound negative impact on patients' HRQL. Mental health component deteriorated significantly over time. The need of including mental health services within a multidisciplinary HCC care model is clearly evident.

Socioeconomic disparities of depressive symptoms and cytokines in hepatocellular carcinoma.

OBJECTIVE: To examine the associations among socioeconomic factors, depressive symptoms, and cytokines in patients diagnosed with hepatocellular carcinoma (HCC). METHODS: A total of 266 patients diagnosed with HCC were administered a battery of questionnaires including a sociodemographic questionnaire and the Center for Epidemiologic StudiesDepression (CES-D) scale. Blood samples were collected to assess serum levels of cytokines using Luminex. Descriptive statistics, Mann-Whitney U, Kruskal-Wallis, linear regression, and Bonferroni corrections were performed to test the hypotheses. RESULTS: Of the 266 patients, 24% reported depressive symptoms in the clinical range (CES-D ≥ 22). Females had higher CES-D score than males (Mann-Whitney U = 7135, P = .014, Padj  = .028). Being unemployed/disabled (Kruskal-Wallis = 14.732, P = .001, Padj  = .005) was found to be associated with higher depressive symptoms in males but not in females. Serum level of IL-2 (Kruskal-Wallis = 17.261, P = .001, Padj  = .005) were found to be negatively associated with education level. Gender (ß = .177, P = .035), income (ß = -.252, P = .004), whether the patient's income met their basic needs (ß = .180, P = .035), and IL-1ß (ß = -.165, P = .045) independently predicted depressive symptoms and together explained 19.4% of variance associated with depressive symptoms. CONCLUSIONS: Sociodemographic and socioeconomic factors were predictive of inflammation and depressive symptoms. Recommendations include the development of gender-targeted interventions for patients diagnosed with HCC who have low socioeconomic status (SES) and may suffer from depressive symptoms.

Change of Uncertainty in Illness and Unmet Care Needs in Patients With Recurrent Hepatocellular Carcinoma During Active Treatment.

BACKGROUND: Uncertainty about or related to cancer-related treatment and prognosis is commonly experienced by patients with hepatocellular carcinoma and might be associated with unmet care needs. However, their dynamic associations have not been examined in this population. OBJECTIVE: The aim of this study was to explore change in unmet care needs and uncertainty under different levels of uncertainty (low vs high) before discharge and the significant factors related to change of uncertainty in patients with recurrent hepatocellular carcinoma after treatment. METHODS: A set of questionnaires was used to collect data including symptom distress, supportive care needs, and uncertainty of illness before discharge (T0), 1 month after discharge (T1), and 2 months after discharge (T2). The significant factors related to uncertainty were identified by generalized estimating equations. RESULTS: The patients with high uncertainty, who were younger in age, had significantly higher levels of symptom distress and unmet care needs. Before discharge, the patients' highest levels of unmet needs were psychological in the high-uncertainty group. Patients with jobs, higher unmet care needs, and high uncertainty before discharge had higher levels of uncertainty over time. CONCLUSIONS: The changes in uncertainty were significantly associated with unmet care needs over time, and the baseline level of uncertainty was a significant factor related to the change of uncertainty. IMPLICATIONS FOR PRACTICE: Healthcare providers should take into account each individual's age, levels of psychological need, and symptom distress and should offer personalized information related to psychological needs and symptom management to decrease levels of uncertainty before discharge.

Estimation of utility weights for major liver diseases according to disease severity in Korea.

BACKGROUND: The global burden of liver diseases, such as hepatocellular carcinoma and liver cirrhosis, is substantial. In this study, we estimated utility weights of liver disease-related health states in the general population using a visual analogue scale (VAS) and the standard gamble (SG) method. METHODS: Depictions of standardized health states related to major liver diseases were developed based on patient education materials and previous publications. To fully reflect disease progression from diagnosis to prognosis, each health state comprised four parts: diagnosis, symptoms, treatment, and progression and prognosis. A total of 407 participants from the Korean general population evaluated the health states using the VAS and SG methods in computer-assisted personal interviews. After excluding illogical responses, mean utility weights were calculated for each health state. RESULTS: The utility weights for health states were significantly different according to the existence of inconsistency in general. According to the VAS results, the health state with the highest utility was 'Chronic hepatitis B virus infection' (0.64), whereas the health state with the lowest utility was 'Hepatocellular carcinoma that requires palliative therapy' (0.17). Similarly, the SG results revealed that the health state with the highest utility was 'Chronic hepatitis B virus infection' (0.85), and the health state with the lowest utility was 'Hepatocellular carcinoma that requires palliative therapy' (0.40). CONCLUSIONS: The estimated utility weights in this study will be useful to measure the burden of liver diseases and evaluate cost-utility of programs for reducing the burden of liver diseases.

Employment-related difficulties and distressed living condition in patients with hepatitis B virus: A qualitative and quantitative study.

BACKGROUND: In Japan, an estimated 400,000 people have the hepatitis B virus (HBV), many of whom were infected as a result of group vaccinations. People with HBV face many challenges, including disease progression, employment-related difficulties, and increased medical expenses. The relationship between HBV victims' daily life suffering and poverty associated with HBV-related employment changes has not been examined. We aimed to clarify the employment-related hardships experienced by Japanese HBV victims, and the relationships between these hardships and daily life suffering, including poverty, through qualitative and quantitative analyses. METHODS: The study population comprised 11,046 people infected with HBV via group vaccination who filed lawsuits in Japan's District Courts by 2014. First, we conducted a qualitative study (2013) using the KJ method, with 107 participants (68 men, mean age 58.9 years; 39 women, mean age 55.3 years). Semi-structured interviews were conducted covering participants' current condition, treatment, medical expenses, and life difficulties (employment- and family-related problems). In 2014, we conducted a quantitative study. We mailed questionnaires to the entire study population, investigating the topics covered in the interviews (response rate 60.1%). Daily life suffering was determined by responses to the question "What do you think about your everyday life situation?" We performed binomial logistic regression analyses to verify the relationships between daily life suffering and disease, employment, and income status. RESULTS: Interview data were integrated into seven islands: intention to work, lack of understanding of HBV in the workplace, inability to buy life insurance, burden due to medical expenses, life failure, dissatisfaction with the system, and wishing for life balance. The quantitative analyses showed significant positive correlations between daily life suffering and liver cancer (odds ratio [OR] 1.47, 95% confidence interval [CI]: 1.00-2.17, p < 0.05), being a part-time/casual employee (OR 1.46, 95% CI: 1.11-1.92 p < 0.01), and an income below the national average (p < 0.01). CONCLUSION: We qualitatively and quantitatively demonstrated that employment-related hardships and daily life suffering are prevalent in people with HBV. Their likelihood of experiencing distress in daily life increases with increasing medical expenses, insecure employment status (e.g., job loss) attributable to HBV, and the resulting poverty.

Missing the obvious: psychosocial obstacles in Veterans with hepatocellular carcinoma.

BACKGROUND: Socioeconomic disparities in patients with hepatocellular carcinoma (HCC) influence medical treatment. In addition to socioeconomic barriers, the Veteran population suffers from significant psychosocial obstacles. This study identifies the social challenges that Veterans face while undergoing treatment for HCC. METHODS: One hundred Veterans at the Palo Alto VA treated for HCC from 2009 to 2014 (50 consecutive patients who underwent a surgical procedure; 50 treated with intra-arterial therapy) were retrospectively reviewed. RESULTS: Substance abuse history was identified in 96%, and half were unemployed. Most patients survived on a limited income [median $1340, interquartile range (IQR) 900-2125]; 36% on ≤ $1000/month, 37% between $1001-2000/month and 27% with >$2000/month. A history of homelessness was found in 30%, more common in those of the lowest income (57% of ≤$1K/month group, 23% of $1-2K/month group and 9% of >$2K/month group, P < 0.01). Psychiatric illness was present in 64/100 patients; among these the majority received ongoing psychiatric treatment. Transportation was provided to 23% of patients who would otherwise have been unable to attend medical appointments. CONCLUSIONS: Psychiatric disease and substance abuse are highly prevalent among Veterans with HCC. Most patients survive on a very meager income. These profound socioeconomic and psychosocial problems must be recognized when providing care for HCC to this population to provide adequate treatment and surveillance.

Congruence in symptom assessment between hepatocellular carcinoma patients and their primary family caregivers in China.

OBJECTIVES: The aims of this cross-sectional study were to explore the agreement in symptom evaluation results between patients and their family caregivers and to search for the possible factors influencing the agreement. METHODS: A convenience sample of 280 dyads consisting of hepatocellular carcinoma patients and their family caregivers was included in this study. All of them completed the symptom checklist of Chinese version of the M. D. Anderson symptom inventory and the evaluations of six common symptoms of hepatocellular carcinoma. RESULTS: The levels of agreement ranged from moderate to substantial. A number of factors associated with caregivers (particularly depression state, age, others helping to care for the patient or not, and the relationship with patient) and patients (traditional Chinese medicine treatment, religion, KPS scores, and educational levels) were significantly correlated with levels of disparity on some symptoms. CONCLUSION: The study illustrates that family caregivers of hepatocellular carcinoma patients can provide reasonable reports on patients' symptoms. Healthcare providers need to pay special and sufficient attention to the caregivers' depression.

The added value of quality of life (QoL) for prognosis of overall survival in patients with palliative hepatocellular carcinoma.

BACKGROUND & AIMS: Several prognostic classifications (PCs) have been developed for use in palliative care in patients with hepatocellular carcinoma (HCC). We have recently suggested that CLIP combined with WHO PS has the greatest discriminative power. We evaluated the prognostic value of quality of life (QoL) data and whether the latter could improve classification of palliative HCC patients. METHODS: This was a reanalysis from the CHOC trial with an evaluation of the discriminative power for overall survival (OS) of the established CLIP/GRETCH/BCLC/BoBar prognostic systems alone and then in association with each of the following groups of parameters: selected clinical factors, QoL as continuous variables, dichotomized QoL, selected clinical factors and continuous QoL, selected clinical factors and dichotomized QoL. Baseline QoL was assessed using the EORTC QLQ-C30. Discriminative power was evaluated with the Harrell's C-index and net reclassification improvement. RESULTS: Quality of life was available in 79% of the patients (n=271). Univariate analysis revealed that better role functioning (HR=0.991 [0.987-0.995]) and better physical functioning (0.991 [0.984-0.997]) scores were associated with longer survival. In contrast, poorer score for fatigue (1.011 [1.006-1.015]) and diarrhoea (1.008 [1.002-1.013]) were associated with shorter survival. After adjustment for clinical and sociodemographic variables, only better role functioning score (0.993 [0.988-0.998]) was associated with longer survival. Adding oedema, hepatomegaly, fatigue and diarrhoea QoL scales to CLIP resulted in the best performance. CONCLUSIONS: Our results confirm that QoL scales are independent prognostic factors of OS in palliative HCC patients. Incorporation of QoL data improved all the studied PCs.

Comparison of survival and quality of life of hepatectomy and thrombectomy using total hepatic vascular exclusion and chemotherapy alone in patients with hepatocellular carcinoma and tumor thrombi in the inferior vena cava and hepatic vein.

BACKGROUND: The prognosis for hepatocellular carcinoma (HCC) along with portal vein tumor thrombi (PVTT) is poor, and surgery has not been considered an option. AIMS: To compare the outcomes and the quality of life (QoL) of patients with HCC and PVTT who underwent hepatic resection and thrombectomy for tumor thrombi in the inferior vena cava and hepatic vein with total hepatic vascular exclusion to the patients who received only chemotherapy. METHODS: We retrospectively reviewed the medical records of patients who received hepatectomy and thrombectomy (n=65), and those who received only chemotherapy (n=50). The surgical outcomes, survival, and QoL that was determined using the Functional Assessment of Cancer Therapy-Hepatobiliary instrument were analyzed and compared. RESULTS: Patients who underwent surgery had a median overall survival of 17 months, compared with patients who underwent chemotherapy for 8 months (P<0.0001). Patients who underwent surgery had a median recurrence-free survival of 14 months, as compared with patients who underwent chemotherapy for 7 months (P<0.0001). The probabilities of 1-year recurrence in the surgery and chemotherapy groups were 27.7 and 70%, respectively (P<0.0001). The QoL total score of the surgery group was significantly higher than that of the control group (P<0.0001). Surgery was slightly, though significantly more cost-effective than chemotherapy based on the quality-adjusted life years. CONCLUSION: Hepatectomy and thrombectomy using the total hepatic vascular exclusion, is a viable surgical management for patients with HCC and PVTT, and is associated with longer overall survival and recurrence-free survival and better QoL than chemotherapy alone.

Validation of the European Organization for Research and Treatment of Cancer QLQ-LMC21 questionnaire for assessment of patient-reported outcomes during treatment of colorectal liver metastases.

BACKGROUND: There is a lack of valid patient-reported outcome (PRO) measures for hepatectomy or palliative treatment of colorectal hepatic metastases. This study examined the validity and reliability of the European Organization for Research and Treatment of Cancer Quality of Life questionnaire liver module (QLQ-LMC21) in patients with liver metastases from colorectal cancer. METHODS: Some 356 patients completed the core questionnaire (QLQ-C30), QLQ-LMC21 and a debriefing questionnaire before and 3 months after hepatectomy or palliative treatment. Construct, criterion and clinical validity were evaluated before and after treatment. RESULTS: Questionnaire compliance was high; less than 1 per cent of data were missing from individual items. Modifications to the hypothesized scale structure produced four scales and nine single items with good reliability, clinical, criterion and construct validity. The QLQ-LMC21 distinguished between patients selected for surgery or palliative treatment in nine of these 13. Significant changes in PROs were observed before and after treatment. The new module discriminated between clinically distinct groups of patients and measured aspects of quality of life not covered in the core questionnaire. CONCLUSION: The EORTC QLQ-LMC21 is a valid and reliable questionnaire module to use with the QLQ-C30 in assessing PROs in hepatectomy or palliative treatment for colorectal liver metastases.

Symptom concerns and quality of life in hepatobiliary cancers.

PURPOSE/OBJECTIVES: To describe the symptom concerns of patients with hepatocellular carcinoma (HCC) and pancreatic cancer and explore the effect of symptoms on patients' quality of life (QOL). DESIGN: Descriptive, longitudinal study. SETTING: Ambulatory clinics of a comprehensive cancer center. SAMPLE: 45 patients actively receiving treatment for either HCC or pancreatic cancer. METHODS: Patients were followed from baseline for three months, with outcome measures repeated monthly. Outcome measures included the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) and the Functional Assessment of Chronic Illness Therapy-Spirituality Subscale (FACIT-Sp-12). Descriptive analysis of demographic, treatment, and symptom data was conducted, followed by two-way repeated measures analysis of variance of FACT-Hep and FACIT-Sp-12 scale scores by diagnosis and treatment type. MAIN RESEARCH VARIABLES: Symptoms, QOL. FINDINGS: Overall QOL is poor in patients with hepatobiliary cancer, and this trend continues over time. Symptoms such as abdominal pain, fatigue, weight loss, and poor appetite commonly are reported in this population. CONCLUSIONS: Patients with hepatobiliary cancer suffer from multiple symptoms that may have a negative affect on overall QOL. Specific QOL domains, such as physical and functional well-being, are of particular concern for patients. IMPLICATIONS FOR NURSING: The identification of specific symptom and QOL concerns in hepatobiliary cancers will enhance clinical care and aid in the future development of multidisciplinary interventions for this understudied cancer population.

[Evaluation of Chinese version of the Functional Assessment of Cancer Therapy-Hepatobiliary questionnaire].

OBJECTIVE: To evaluate the effectiveness of the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) questionnaire in measuring the quality of life in patients with primary hepatic carcinoma (PHC) in China. METHODS: FACT-Hep questionnaire was translated into Chinese and revised properly. From September 2005 to April 2006, one hundred and eighty patients with primary liver carcinoma were admitted and measured by using the Chinese version of FACT-Hep questionnaire, and the reliabilities, validities and responsibilities of the questionnaire were assessed. RESULTS: Correlation coefficient was higher between items and dimension of their corresponding domain (0.5933+/-0.1652) than that between the items and other domains (0.2749+/-0.1922). Six principal constituents were extracted by factor analysis and represented all domains of the questionnaire. The combinations of components were consistent with what was expected. The correlation coefficient of criterion-related validity was 0.828. The test-retest reliability correlation coefficients of physical, social/family, emotion, function, symptom and total questionnaire were 0.731, 0.334, 0.953, 0.786, 0.785 and 0.801 respectively, and the values of Cronbach's alpha were 0.7397, 0.4193, 0.7914, 0.8250, 0.8399 and 0.9161, respectively. There were statistical differences in scores of FACT-Hep questionnaire in different PHC stages or in different Child-Pugh classes (P<0.05). CONCLUSION: The FACT-Hep questionnaire can measure the quality of life in patients with PHC with good reliability, validity and responsiveness; it can be used in assessing the disease-specific health-related quality of life of patients with hepatobiliary cancers.

Health-related quality of life: Hepatocellular carcinoma, chronic liver disease, and the general population.

Health related quality of life (HRQL) has become an important endpoint in testing the efficacy of treatments for chronic liver disease (CLD) and the consequences of CLD which include hepatocellular carcinoma (HCC) and liver failure. However, a paucity of research on HRQL has been conducted with these patient populations. The aims of the present study were to compare persons diagnosed with HCC to persons diagnosed with CLD as well as with the general population (GP) on a disease-specific instrument measuring HRQL. If significant and clinically meaningful differences in HRQL exist, HRQL may be used as a corroborative indicator of disease progression in patients with CLD. Two hundred and seventy-two people participated in the present study. Of these participants, 83 were diagnosed with HCC, 51 with CLD, and 138 were from the GP. None of the patients in the HCC or CLD samples were actively receiving chemotherapeutic treatments for the CLD or HCC. A sociodemographic questionnaire and the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) was administered to participants. The results of the study suggested that people diagnosed with HCC, prior to treatment, had a poorer overall HRQL when compared to those persons with CLD and the general population, as expected. The differences in HRQL were statistically significant as well as clinically meaningful. People diagnosed with CLD and HCC respectively, reported better social and family well-being than the general population. Furthermore, people with CLD reported equivalent emotional well-being as the general population sample. HRQL subscale scores, with the exception of social and family well-being, discriminated group membership.

Assessment of symptom experience in patients undergoing hepatic resection or ablation.

BACKGROUND: Quality of life (QOL) currently is considered both clinically meaningful and biologically important for patient outcome and is considered as important as disease-free and overall survival. Thus, the objective of the current study was to evaluate the QOL symptoms of patients who underwent major hepatic resection, minor hepatic resection, and ablation for primary or metastatic cancer to the liver. METHODS: From October 2002 to June 2004, 40 patients who underwent either hepatic ablation or resection were enrolled. Patients were assessed at 5 time points (the initial visit, the initial postoperative visit, and visits at 6 weeks, 3 months, and 6 months) by questionnaires of the Functional Assessment in Cancer Therapy (FACT) core instrument with the Hepatobiliary subscale (FACT-Hep), the FACT Hepatobiliary Symptom Index (FHSI-8), the Profile of Mood States (POMS), the European Organization for Research and Treatment of Cancer (EORTC) QOL questionnaire (QLQ) for patients with pancreatic cancer (QLQ-PAN), and the general core EORTC QLQ. RESULTS: The patients enrolled included 20 men and 20 women with a median age of 62 years (range, 41-77 years), including 24 patients who underwent major hepatectomy, 8 patients who underwent minor hepatectomy, and 8 patients who underwent ablation. An evaluation of the FACT Physical, Social, Emotional, and Functional subscales demonstrated no differences at the initial or first postoperative visits. However, at 6 weeks, both the Physical (P = .0455) and Functional (P = .0372) scores were significantly worse for the major hepatectomy group. At 3 months, all QOL parameters were similar. Similar differences were observed at 6 weeks for the FHSI-8 (P = .02), POMS (P = .007), QLQ-PAN (P = .04), and EORTC (P = .003) with the resolution of this difference at 3 months. CONCLUSIONS: There was little difference in QOL between patients who underwent major hepatic resection, minor hepatic resection, and hepatic ablation. Patients who underwent major hepatectomy demonstrated a worse QOL at 6 weeks compared with patients who underwent minor hepatic resection and hepatic ablation, with the resolution of this difference and significant improvements observed in all 3 groups at 3 months.

Candidates for liver transplantation for cancer: physical, psychological, and social conditions.

BACKGROUND: There is little knowledge of the psychological and social conditions of candidates for liver transplantation and the meaning that these patients attribute to those conditions. METHODS: The research has been conducted with quantitative and qualitative methods. For the quantitative study, 80 patients were assessed with four evaluation instruments: the Interdisciplinary Group for Cancer Care Evaluation in Italy (GIVIO) questionnaire for quality of life, the Needs Evaluation Questionnaire (NEQ) for psychosocial needs, the Minnesota Multiphasic Personality Inventory (MMPI) personality test, and a questionnaire for the family's reactions to the illness. The qualitative evaluation was conducted to better understand the meaning of the transplantation as expressed by the patients, the integration of the new organ, and the symbolic relationship with the donor with particular attention to the different levels of patients' awareness. RESULTS: The quantitative evaluation showed a good level of quality of life assessed by GIVIO and a low prevalence in the personality disorder scales detected by the MMPI. The patients' needs assessed by NEQ showed a high need of information about the future conditions (77%) followed by the need for more explanation of examinations (49%) and treatments (50%). The qualitative study identified and analyzed two opposite groups of five patients each: those who did not recognize and did not express any emotional experience and those who recognized and expressed a particularly intense emotional experience. CONCLUSION: The psychosocial condition of transplant candidates with liver cancer is characterized by an impact that is more psychological than physical. The qualitative analysis performed allows the hypothesis that the patient's level of awareness is an important indicator to predict the type of adaptation after transplantation.

Measuring health-related quality of life in patients with hepatobiliary cancers: the functional assessment of cancer therapy-hepatobiliary questionnaire.

PURPOSE: This is the first report on the development and initial validation of the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) questionnaire, a 45-item self-report instrument designed to measure health-related quality of life (HRQL) in patients with hepatobiliary cancers. The FACT-Hep consists of the 27-item FACT-G, which assesses generic HRQL concerns, and the newly validated 18-item Hepatobiliary Subscale (HS), which assesses disease-specific issues. PATIENTS AND METHODS: The development of the HS followed a four-phase process of item generation, item reduction, scale construction, and reliability/validity testing. Two independent samples were studied: item generation (sample 1; n = 30) and reliability/validity testing (sample 2; n = 51). RESULTS: In sample 2, all subscales and aggregated scores showed high internal consistency at initial assessment (Cronbach's alpha range, 0.72 to 0.94) and retesting (Cronbach's alpha range, 0.81 to 0.94). Measurement stability over a 3- to 7-day period was also high for all aggregated scales (test-retest correlation range, 0.84 to 0.91; intraclass correlation coefficient range, 0.82 to 0.90). Convergent and divergent validity were demonstrated by examining relationships between FACT subscales and mood, social support, and social desirability. Finally, when performance status and treatment status were used to divide sample 2, the HS differentiated groups to a degree comparable to the Physical and Functional Well-Being subscales of the FACT-G, thereby contributing favorably to a 32-item Trial Outcome Index. In addition to the 18 validated, scored items in the HS, seven treatment-related items may be appended, if clinically indicated, as a separate subscale. CONCLUSION: The 45-item FACT-Hep can be used independently as a brief measure of disease-related symptoms and functioning. Alone or paired with the FACT-G, the HS has promise for use in assessing the disease-specific HRQL of patients with hepatobiliary cancers.

Measuring quality of life of Chinese cancer patients: A validation of the Chinese version of the Functional Assessment of Cancer Therapy-General (FACT-G) scale.

BACKGROUND: Few cancer specific quality-of-life (QoL) measures from the West have been translated for use with Chinese-speaking patients, and no substantial validation of these translations with adequately large cohorts has been published previously, to the authors' knowledge. The Functional Assessment of Cancer Therapy-General (FACT-G) is a well-validated QoL instrument that is specific to cancer patients. The scale was translated into Chinese and the psychometric properties of this translated scale (FACT-G [Ch]) were tested with a Chinese sample in Hong Kong, China. METHODS: A total of 1262 Chinese cancer patients were selected in 3 samples from 5 Hong Kong regional hospitals. Quantitative and qualitative data were used to assess the cultural equivalence, factor structure, reliability, and validity of the FACT-G (Ch). RESULTS: Focus group discussions indicated that the FACT-G was seen as covering QoL domains identified as important and relevant to Chinese cancer patients, though in some respects it was seen as having limited scope in this sample. Psychometrically, the factor structure of the FACT-G deviated from that of the original work. The FACT-G (Ch) had acceptable reliability (Cronbach alpha 0.85). The convergent validity of the FACT-G (Ch) with a generic QoL measure (WHOQOL-BREF[HK]) was 0.72 (P < 0.001), and divergent validity showed low correlations of less than 0.15 (P < 0.05) with non-QoL measures. CONCLUSIONS: Focus group data indicated that the FACT-G translation into Chinese was seen as a conceptually relevant and moderately sufficient QoL measure. Psychometrically, the instrument had acceptable properties, but conceptual differences from the original version were suggested. Although more work is needed to increase its adequacy, the translated scale has reasonable utility for use with Chinese populations in clinical settings.