Multilevel Social Determinants of Patient-Reported Outcomes in Young Survivors of Childhood Cancer.

In this study, the social determinants of patient-reported outcomes (PROs) in young survivors of childhood cancer aged <18 years are researched. This cross-sectional study investigated social determinants associated with poor PROs among young childhood cancer survivors. We included 293 dyads of survivors receiving treatment at St. Jude Children's Research Hospital who were <18 years of age during follow-up from 2017 to 2018 and their primary caregivers. Social determinants included family factors (caregiver-reported PROs, family dynamics) and county-level deprivation (socioeconomic status, physical environment via the County Health Rankings & Roadmaps). PROMIS measures assessed survivors' and caregivers' PROs. General linear regression tested associations of social determinants with survivors' PROs. We found that caregivers' higher anxiety was significantly associated with survivors' poorer depression, stress, fatigue, sleep issues, and reduced positive affect (p < 0.05); caregivers' sleep disturbances were significantly associated with lower mobility in survivors (p < 0.05). Family conflicts were associated with survivors' sleep problems (p < 0.05). Residing in socioeconomically deprived areas was significantly associated with survivors' poorer sleep quality (p < 0.05), while higher physical environment deprivation was associated with survivors' higher psychological stress and fatigue and lower positive affect and mobility (p < 0.05). Parental, family, and neighborhood factors are critical influences on young survivors' quality of life and well-being and represent new intervention targets.

Using natural language processing to analyze unstructured patient-reported outcomes data derived from electronic health records for cancer populations: a systematic review.

INTRODUCTION: Patient-reported outcomes (PROs; symptoms, functional status, quality-of-life) expressed in the 'free-text' or 'unstructured' format within clinical notes from electronic health records (EHRs) offer valuable insights beyond biological and clinical data for medical decision-making. However, a comprehensive assessment of utilizing natural language processing (NLP) coupled with machine learning (ML) methods to analyze unstructured PROs and their clinical implementation for individuals affected by cancer remains lacking. AREAS COVERED: This study aimed to systematically review published studies that used NLP techniques to extract and analyze PROs in clinical narratives from EHRs for cancer populations. We examined the types of NLP (with and without ML) techniques and platforms for data processing, analysis, and clinical applications. EXPERT OPINION: Utilizing NLP methods offers a valuable approach for processing and analyzing unstructured PROs among cancer patients and survivors. These techniques encompass a broad range of applications, such as extracting or recognizing PROs, categorizing, characterizing, or grouping PROs, predicting or stratifying risk for unfavorable clinical results, and evaluating connections between PROs and adverse clinical outcomes. The employment of NLP techniques is advantageous in converting substantial volumes of unstructured PRO data within EHRs into practical clinical utilities for individuals with cancer.

Response-shift effects in childhood cancer survivors: A prospective study.

BACKGROUND: Treatment-related late effects can worsen over time among cancer survivors. Such worsening health states may trigger changes in internal standards, values, or conceptualization of quality-of-life (QOL). This "response-shift" phenomenon can jeopardize the validity of QOL assessment, and misrepresent QOL comparisons over time. This study tested response-shift effects in reporting future-health concerns among childhood cancer survivors who experienced progression in chronic health conditions (CHCs). METHODS: 2310 adult survivors of childhood cancer from St. Jude Lifetime Cohort Study completed a survey and clinical assessment at two or more timepoints. Based on 190 individual CHCs graded for adverse-event severity, global CHC burden was classified as "progression" or "non-progression". QOL was assessed using the SF-36TM eight domains and physical- and mental-component summary scores (PCS, MCS). A single global item measured concerns about future health. Random-effects models comparing survivors with and without progressive global CHC burden (progressors vs. non-progressors) evaluated response-shift effects (recalibration, reprioritization, reconceptualization) in reporting future-health concerns. RESULTS: Compared with non-progressors, progressors were more likely to de-emphasize (or downplay) overall physical and mental health in evaluating future-health concerns (p-values<0.05), indicating recalibration response-shift, and more likely to de-emphasize physical health earlier rather than later in follow-up (p-value<0.05), indicating reprioritization response-shift. There was evidence for a reconceptualization response-shift with progressor classification associated with worse-than-expected future-health concerns and physical health, and better-than-expected pain and role-emotional functioning (p-values<0.05). CONCLUSION: We identified three types of response-shift phenomena in reporting concerns about future health among childhood cancer survivors. Survivorship care or research should consider response-shift effects when interpreting changes in QOL over time.

Ten Considerations for Integrating Patient-Reported Outcomes into Clinical Care for Childhood Cancer Survivors.

Patient-reported outcome measures (PROMs) are subjective assessments of health status or health-related quality of life. In childhood cancer survivors, PROMs can be used to evaluate the adverse effects of cancer treatment and guide cancer survivorship care. However, there are barriers to integrating PROMs into clinical practice, such as constraints in clinical validity, meaningful interpretation, and technology-enabled administration of the measures. This article discusses these barriers and proposes 10 important considerations for appropriate PROM integration into clinical care for choosing the right measure (considering the purpose of using a PROM, health profile vs. health preference approaches, measurement properties), ensuring survivors complete the PROMs (data collection method, data collection frequency, survivor capacity, self- vs. proxy reports), interpreting the results (scoring methods, clinical meaning and interpretability), and selecting a strategy for clinical response (integration into the clinical workflow). An example framework for integrating novel patient-reported outcome (PRO) data collection into the clinical workflow for childhood cancer survivorship care is also discussed. As we continuously improve the clinical validity of PROMs and address implementation barriers, routine PRO assessment and monitoring in pediatric cancer survivorship offer opportunities to facilitate clinical decision making and improve the quality of survivorship care.

A Review of Patient-Reported Outcome Measures in Childhood Cancer.

Patient-reported outcomes (PROs) are used in clinical work and research to capture the subjective experiences of childhood cancer patients and survivors. PROs encompass content domains relevant and important to this population, including health-related quality-of-life (HRQOL), symptoms, and functional status. To inform future efforts in the application of PRO measures, this review describes the existing generic and cancer-specific PRO measures for pediatric cancer populations and summarizes their characteristics, available language translations, content coverage, and measurement properties into tables for clinicians and researchers to reference before choosing a PRO measure that suits their purpose. We have identified often unreported measurement properties that could provide evidence about the clinical utility of the PRO measures. Routine PRO assessment in pediatric cancer care offers opportunities to facilitate clinical decision-making and improve quality of care for these patients. However, we suggest that before implementing PRO measures into research or clinical care, the psychometric properties and content coverage of the PRO measures must be considered to ensure that PRO measures are appropriately assessing the intended construct in childhood cancer patients.

The impact of COVID-19 on cancer care in a tertiary hospital in Korea: possible collateral damage to emergency care.

OBJECTIVES: We investigated the impact of the COVID-19 pandemic on cancer care in a tertiary hospital in Korea without specific lockdown measures. METHODS: A retrospective cohort of cancer patients from one of the largest tertiary hospitals in Korea was used to compare healthcare utilization in different settings (outpatient cancer clinic, the emergency department [ED], and admissions to the hematology/oncology ward) between January 1 and December 31, 2020 and the same time period in 2019. The percent changes in healthcare utilization between the 2 periods were calculated. RESULTS: A total of 448,833 cases from the outpatient cohort, 26,781 cases from the ED cohort, and 14,513 cases from the admission cohort were reviewed for 2019 and 2020. The total number of ED visit cases significantly decreased from 2019 to 2020 by 18.04%, whereas the proportion of cancer patients remained stable. The reduction in ED visits was more prominent in patients with symptoms suspicious for COVID-19, high-acuity cases, and those who lived in non-capital city areas. There were no significant changes in the number of total visits, new cases in the outpatient clinic, or the total number of hospitalizations between the 2 periods. CONCLUSIONS: During the pandemic, the number of ED visits significantly decreased, while the use of the outpatient clinic and hospitalizations were not affected. Cancer patients' ED visits decreased after the COVID-19 outbreak, suggesting the potential for collateral damage outside the hospital if patients cannot reach the ED in a timely manner.

Blood DNA methylation signatures are associated with social determinants of health among survivors of childhood cancer.

Social epigenomics is an emerging field in which social scientist collaborate with computational biologists, especially epigeneticists, to address the underlying pathway for biological embedding of life experiences. This social epigenomics study included long-term childhood cancer survivors enrolled in the St. Jude Lifetime Cohort. DNA methylation (DNAm) data were generated using the Illumina EPIC BeadChip, and three social determinants of health (SDOH) factors were assessed: self-reported educational attainment, personal income, and an area deprivation index based on census track data. An epigenome-wide association study (EWAS) was performed to evaluate the relation between DNAm at each 5'-cytosine-phosphate-guanine-3' (CpG) site and each SDOH factor based on multivariable linear regression models stratified by ancestry (European ancestry, n = 1,618; African ancestry, n = 258). EWAS among survivors of European ancestry identified 130 epigenome-wide significant SDOH-CpG associations (P < 9 × 10-8), 25 of which were validated in survivors of African ancestry (P < 0.05). Thirteen CpGs were associated with all three SDOH factors and resided at pleiotropic loci in cigarette smoking-related genes (e.g., CLDND1 and CPOX). After accounting for smoking and body mass index, these associations remained significant with attenuated effect sizes. Seven of 13 CpGs were associated with gene expression level based on 57 subsamples with blood RNA sequencing data available. In conclusion, DNAm signatures, many resembling the effect of tobacco use, were associated with SDOH factors among survivors of childhood cancer, thereby suggesting that biologically distal SDOH factors influence health behaviours or related factors, the epigenome, and subsequently survivors' health.

Impact of COVID-19 on the End-of-Life Care of Cancer Patients Who Died in a Korean Tertiary Hospital: A Retrospective Study.

Purpose: Social distancing and strict visitor restrictions at hospitals have been national policies since the onset of the coronavirus disease 2019 (COVID-19) pandemic. This has challenged the concept of a good death in comfort with the opportunity to say goodbye. Little is known about how these measures have influenced end-of-life (EOL) care among cancer patients who die in acute care hospitals. This study examined changes in the EOL care of cancer patients during the COVID-19 pandemic. Methods: We retrospectively analyzed 1,456 adult cancer patients who died in 2019 (n=752) and 2020 (n=704) at a tertiary hospital. Data on EOL care-symptom control and comfort care in an imminently dying state, preparation for death, place of death, and aggressive care in the last month-were reviewed. Results: The 1,456 patients had a median age of 67 years, and 62.5% were men. Patients who died in 2020 were more likely to experience agitation or delirium before death (17.2% vs. 10.9%), to use inotropes/vasopressors near death (59.2% vs. 52.3%), and to receive cardiopulmonary resuscitation in their last months (16.3% vs. 12.5%) than those who died in 2019. Additionally, the number of deaths in the emergency room doubled in 2020 compared to 2019 (from 7.1% to 14.1%). Conclusion: This study suggests that EOL care for cancer patients who died in a tertiary hospital deteriorated during the COVID-19 pandemic. The implementation of medical care at the EOL and the preferred place of death should be discussed carefully in advance for high-quality EOL care.

Natural Language Processing and Machine Learning Methods to Characterize Unstructured Patient-Reported Outcomes: Validation Study.

BACKGROUND: Assessing patient-reported outcomes (PROs) through interviews or conversations during clinical encounters provides insightful information about survivorship. OBJECTIVE: This study aims to test the validity of natural language processing (NLP) and machine learning (ML) algorithms in identifying different attributes of pain interference and fatigue symptoms experienced by child and adolescent survivors of cancer versus the judgment by PRO content experts as the gold standard to validate NLP/ML algorithms. METHODS: This cross-sectional study focused on child and adolescent survivors of cancer, aged 8 to 17 years, and caregivers, from whom 391 meaning units in the pain interference domain and 423 in the fatigue domain were generated for analyses. Data were collected from the After Completion of Therapy Clinic at St. Jude Children's Research Hospital. Experienced pain interference and fatigue symptoms were reported through in-depth interviews. After verbatim transcription, analyzable sentences (ie, meaning units) were semantically labeled by 2 content experts for each attribute (physical, cognitive, social, or unclassified). Two NLP/ML methods were used to extract and validate the semantic features: bidirectional encoder representations from transformers (BERT) and Word2vec plus one of the ML methods, the support vector machine or extreme gradient boosting. Receiver operating characteristic and precision-recall curves were used to evaluate the accuracy and validity of the NLP/ML methods. RESULTS: Compared with Word2vec/support vector machine and Word2vec/extreme gradient boosting, BERT demonstrated higher accuracy in both symptom domains, with 0.931 (95% CI 0.905-0.957) and 0.916 (95% CI 0.887-0.941) for problems with cognitive and social attributes on pain interference, respectively, and 0.929 (95% CI 0.903-0.953) and 0.917 (95% CI 0.891-0.943) for problems with cognitive and social attributes on fatigue, respectively. In addition, BERT yielded superior areas under the receiver operating characteristic curve for cognitive attributes on pain interference and fatigue domains (0.923, 95% CI 0.879-0.997; 0.948, 95% CI 0.922-0.979) and superior areas under the precision-recall curve for cognitive attributes on pain interference and fatigue domains (0.818, 95% CI 0.735-0.917; 0.855, 95% CI 0.791-0.930). CONCLUSIONS: The BERT method performed better than the other methods. As an alternative to using standard PRO surveys, collecting unstructured PROs via interviews or conversations during clinical encounters and applying NLP/ML methods can facilitate PRO assessment in child and adolescent cancer survivors.

Association of co-morbidities with financial hardship in survivors of adult cancer.

PURPOSE: To evaluate the impact of co-morbidities on financial hardship in adult cancer survivors and the role of health insurance and a usual source of care (i.e., a particular doctor's office/health center/other place that the person usually goes if he/she is sick or needs advice) in relieving this impact. METHODS: Using the Medical Expenditure Panel Survey, we estimated prevalence of two financial hardships, out-of-pocket (OOP) burden and financial worry, among 1196 adult cancer survivors. A modified Charlson co-morbidity index (CCI) assessed co-morbidities, which represent a medical event (e.g., a doctor's appointment) associated with co-morbid conditions within the past 1 year. Multivariable logistic regression tested the influence of health insurance and a usual source of care on associations of co-morbidities with financial hardship by middle/high vs. low-income families and by working vs. retirement-age individuals. RESULTS: Years since cancer diagnosis ranged from 0 to 76 years (mean: 10.3, SD: 9.8), 10 and 25% of survivors experienced OOP burden and financial worry. For OOP burden, increased CCI was a risk factor among survivors of low-income families, ORs: 1.91 (95% CI: 1.06, 3.46) for a CCI 1-2 and 3.37 (95% CI: 1.72, 6.61) for a CCI ≥ 3 vs. CCI of 0. For financial worry, increased CCI was a risk factor among working-age survivors, ORs: 1.58 (95% CI: 1.02, 2.47) for a CCI 1-2 and 2.15 (95% CI: 1.19, 3.87) for a CCI ≥ 3 vs. CCI of 0. However, having health insurance and a usual source of care did not mitigate impact of co-morbidities on financial hardship (P values > 0.05). CONCLUSIONS: Impact of co-morbidities on OOP and financial worry burden was greatest in survivors of low-income families and working-age, respectively. Health insurance and a usual source of care did not relieve the impact of co-morbidities on financial hardship. IMPLICATIONS: Effective strategies are warranted to mitigate financial hardship for survivors.

Persistent variations of blood DNA methylation associated with treatment exposures and risk for cardiometabolic outcomes in long-term survivors of childhood cancer in the St. Jude Lifetime Cohort.

BACKGROUND: It is well-established that cancer treatment substantially increases the risk of long-term adverse health outcomes among childhood cancer survivors. However, there is limited research on the underlying mechanisms. To elucidate the pathophysiology and a possible causal pathway from treatment exposures to cardiometabolic conditions, we conducted epigenome-wide association studies (EWAS) to identify the DNA methylation (DNAm) sites associated with cancer treatment exposures and examined whether treatment-associated DNAm sites mediate associations between specific treatments and cardiometabolic conditions. METHODS: We included 2052 survivors (median age 33.7 years) of European ancestry from the St. Jude Lifetime Cohort Study, a retrospective hospital-based study with prospective clinical follow-up. Cumulative doses of chemotherapy and region-specific radiation were abstracted from medical records. Seven cardiometabolic conditions were clinically assessed. DNAm profile was measured using MethylationEPIC BeadChip with blood-derived DNA. RESULTS: By performing multiple treatment-specific EWAS, we identified 935 5'-cytosine-phosphate-guanine-3' (CpG) sites mapped to 538 genes/regions associated with one or more cancer treatments at the epigenome-wide significance level (p < 9 × 10-8). Among the treatment-associated CpGs, 8 were associated with obesity, 63 with hypercholesterolemia, and 17 with hypertriglyceridemia (false discovery rate-adjusted p < 0.05). We observed substantial mediation by methylation at four independent CpGs (cg06963130, cg21922478, cg22976567, cg07403981) for the association between abdominal field radiotherapy (abdominal-RT) and risk of hypercholesterolemia (70.3%) and by methylation at three CpGs (cg19634849, cg13552692, cg09853238) for the association between abdominal-RT and hypertriglyceridemia (54.6%). In addition, three CpGs (cg26572901, cg12715065, cg21163477) partially mediated the association between brain-RT and obesity with a 32.9% mediation effect, and two CpGs mediated the association between corticosteroids and obesity (cg22351187, 14.2%) and between brain-RT and hypertriglyceridemia (cg13360224, 10.5%). Notably, several mediator CpGs reside in the proximity of well-established dyslipidemia genes: cg21922478 (ITGA1) and cg22976567 (LMNA). CONCLUSIONS: In childhood cancer survivors, cancer treatment exposures are associated with DNAm patterns present decades following the exposure. Treatment-associated DNAm sites may mediate the causal pathway from specific treatment exposures to certain cardiometabolic conditions, suggesting the utility of DNAm sites as risk predictors and potential mechanistic targets for future intervention studies.

The major effects of health-related quality of life on 5-year survival prediction among lung cancer survivors: applications of machine learning.

The primary goal of this study was to evaluate the major roles of health-related quality of life (HRQOL) in a 5-year lung cancer survival prediction model using machine learning techniques (MLTs). The predictive performances of the models were compared with data from 809 survivors who underwent lung cancer surgery. Each of the modeling technique was applied to two feature sets: feature set 1 included clinical and sociodemographic variables, and feature set 2 added HRQOL factors to the variables from feature set 1. One of each developed prediction model was trained with the decision tree (DT), logistic regression (LR), bagging, random forest (RF), and adaptive boosting (AdaBoost) methods, and then, the best algorithm for modeling was determined. The models' performances were compared using fivefold cross-validation. For feature set 1, there were no significant differences in model accuracies (ranging from 0.647 to 0.713). Among the models in feature set 2, the AdaBoost and RF models outperformed the other prognostic models [area under the curve (AUC) = 0.850, 0.898, 0.981, 0.966, and 0.949 for the DT, LR, bagging, RF and AdaBoost models, respectively] in the test set. Overall, 5-year disease-free lung cancer survival prediction models with MLTs that included HRQOL as well as clinical variables improved predictive performance.

Patient-reported outcomes in paediatric cancer survivorship: a qualitative study to elicit the content from cancer survivors and caregivers.

OBJECTIVES: Content elucidation for patient-reported outcomes (PROs) in paediatric cancer survivorship is understudied. We aimed to compare differences in the contents of five PRO domains that are important to paediatric cancer survivorship through semistructured interviews with paediatric cancer survivors and caregivers, and identified new concepts that were not covered in the item banks of the Patient-Reported Outcomes Measurement Information System (PROMIS). DESIGN: Semistructured interviews to collect qualitative PRO data from survivors and caregivers. SETTING: A survivorship care clinic of a comprehensive cancer centre in the USA. PARTICIPANTS: The study included 51 survivors (<18 years old) and 35 caregivers who completed interviews between August and December 2016. Content experts coded the transcribed interviews into 'meaningful concepts' per PROMIS item concepts and identified new concepts per a consensus. Frequencies of meaningful concepts used by survivors and caregivers were compared by Wilcoxon rank-sum test. RESULTS: For pain and meaning and purpose, 'Hurt a lot' and 'Purpose in life' were top concepts for survivors and caregivers, respectively. For fatigue and psychological stress, 'Needed to sleep during the day'/'Trouble doing schoolwork' and 'Felt worried' were top concepts for survivors, and 'Felt tired' and 'Felt distress'/'Felt stressed' for caregivers. Survivors reported more physically relevant contents (eg, 'Hard to do sport/exercise'; 0.78 vs 0.23, p=0.007) for pain, fatigue and stress, whereas caregivers used more emotionally relevant concepts (eg, 'Too tired to enjoy things I like to do'; 0.31 vs 0.05, p=0.025). Both groups reported positive thoughts for meaning and purpose (eg, 'Have goals for myself'). One (psychological stress, meaning and purpose) to eleven (fatigue) new concepts were generated. CONCLUSIONS: Important PRO contents in the form of meaningful concepts raised by survivors and caregivers were different and new concepts emerged. PRO measures are warranted to include survivorship-specific items by accounting for the child's and the caregiver's viewpoints.

Efficacy of health coaching and a web-based program on physical activity, weight, and distress management among cancer survivors: A multi-centered randomised controlled trial.

OBJECTIVES: To investigate the efficacy of health coaching and a web-based program on survivor physical activity (PA), weight, and distress management among stomach, colon, lung and breast cancer patients. METHODS: This randomised, controlled, 1-year trial conducted in five hospitals recruited cancer survivors within 2 months of completing primary cancer treatment who had not met ≥1 of these behavioural goals: (i) conducting moderate PA for at least 150 minutes/week or strenuous exercise for over 75 minutes per week or, in the case of lung cancer patients, low or moderate intensity exercise for over 12.5 MET per week, (ii) maintaining normal weight, and (iii) attaining a score >72 in the Post Traumatic Growth Inventory (PTGI). Participants were randomly assigned to one of three groups: the control group, a web-only group, or a health coaching + web group. The primary endpoint was based on a composite of PA, weight, and PTGI score at 12 months. RESULTS: Patients in the health coaching + web group (difference = 6.6%, P = .010) and the web-only group (difference = 5.9%, P = .031) had greater overall improvements across the three-outcome composite than the control group. The health coaching + web group had greater overall improvement in PTGI (difference = 12.6%; P < .001) than the control group, but not in PA and weight. CONCLUSION: The web-based program, with or without health coaching, may improve health behaviours including PA, weight, and distress management among cancer survivors within 2 months of completing primary cancer treatment. The web-based program with health coaching was mainly effective for reducing psychological distress.

Negligible Effects of the Survey Modes for Patient-Reported Outcomes: A Report From the Childhood Cancer Survivor Study.

PURPOSE: This study compared the measurement properties for multiple modes of survey administration, including postal mail, telephone interview, and Web-based completion of patient-reported outcomes (PROs) among survivors of childhood cancer. METHODS: The population included 6,974 adult survivors of childhood cancer in the Childhood Cancer Survivor Study who completed the Brief Symptom Inventory-18 (BSI-18), which measured anxiety, depression, and somatization symptoms. Scale reliability, construct validity, and known-groups validity related to health status were tested for each mode of completion. The multiple indicators and multiple causes technique was used to identify differential item functioning (DIF) for the BSI-18 items that responded through a specific survey mode. The impact of the administration mode was tested by comparing differences in BSI-18 scores between the modes accounting for DIF effects. RESULTS: Of the respondents, 58%, 27%, and 15% completed postal mail, Web-based, and telephone surveys, respectively. Survivors who were male; had lower education, lower household income, or poorer health status; or were treated with cranial radiotherapy were more likely to complete a telephone-based survey compared with either a postal mail or Web-based survey (all P < .05). Scale reliability and validity were equivalent across the 3 survey options. One, 2, and 5 items from the anxiety, depression, and somatization domains, respectively, were identified as having significant DIF among survivors who responded by telephone (P < .05). However, estimated BSI-18 domain scores, especially depression and anxiety, between modes did not differ after accounting for DIF effects. CONCLUSION: Certain survivor characteristics were associated with choosing a specific mode for PRO survey completion. However, measurement properties among these modes were equivalent, and the impact of using a specific mode on scores was minimal.

Predicting Disease-Free Lung Cancer Survival Using Patient Reported Outcome (PRO) Measurements with Comparisons of Five Machine Learning Techniques (MLT).

The study was to develop the lung cancer patients' prediction model for predicting 5-year survival after completion of treatment by using Machine Learning Technology (MLT), adding patient reporting (PRO) measurements of lung cancer survivors to a variety of clinical parameters. Finally, the survival prediction models with the addition of lung cancer survivors' PRO measurements to the well-known clinical variables, based on diverse MLT, improved the predictive performance that explains 5-year disease-free lung cancer survival.

Efficacy of a Decision Aid Consisting of a Video and Booklet on Advance Care Planning for Advanced Cancer Patients: Randomized Controlled Trial.

CONTEXT: Few randomized controlled trials of advance care planning (ACP) with a decision aid (DA) show an effect on patient preferences for end-of-life (EOL) care over time, especially in racial/ethnic settings outside the U.S. OBJECTIVES: The objective of this study was to examine the effect of a decision aid consisting of a video and an ACP booklet for EOL care preferences among patients with advanced cancer. METHODS: Using a computer-generated sequence, we randomly assigned (1:1) patients with advanced cancer to a group that received a video and workbook that both discussed either ACP (intervention group) or cancer pain control (control group). At baseline, immediately after intervention, and at 7 weeks, we evaluated the subjects' preferences. The primary outcome was preference for EOL care (active treatment, life-prolonging treatment, or hospice care) on the assumption of a fatal disease diagnosis and the expectation of death 1) within 1 year, 2) within several months, and 3) within a few weeks. We used Bonferroni correction methods for multiple comparisons with an adjusted P level of 0.005. RESULTS: From August 2017 to February 2018, we screened 287 eligible patients, of whom 204 were enrolled to the intervention (104 patients) or the control (100 patients). At postintervention, the intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within 1 year (P < 0.005). Assuming a life expectancy of several months, the change in preferences was significant for active treatment and hospice care (P < 0.005) but not for life-prolonging treatment. The intervention group showed a significant increase in preference for active treatment, life-prolonging treatment, and hospice care on the assumption of a fatal disease diagnosis and the expectation of death within a few weeks (P < 0.005). From baseline to 7 weeks, the decrease in preference in the intervention group was not significant for active treatment, life-prolonging treatment, and hospice care in the intervention group in the subset expecting to die within 1 year, compared with the control group. Assuming a life expectancy of several months and a few weeks, the change in preferences was not significant for active treatment and for life-prolonging treatment but was significantly greater for hospice care in the intervention group (P < 0.005). CONCLUSION: ACP interventions that included a video and an accompanying book improved preferences for EOL care.

Correction to: Priorities of a "good death" according to cancer patients, their family caregivers, physicians, and the general population: a nationwide survey.

While recently extending that research, however, we discovered that 236 members of the general population were mistakenly duplicated by the investigating agency (Word Research) and 1241 were reported rather than 1005. Here, we present corrections and discuss the relevant data.

Regional Differences in Colorectal Cancer Mortality Between 2000 and 2013 in Republic of Korea.

OBJECTIVE: Colorectal cancer (CRC) is the fourth most common site for cancer death in the Republic of Korea. The aim of this study was to describe the trends of colorectal cancer mortality by region. METHODS: CRC mortality trends in Republic of Korea were described by region using a Joinpoint regression model in both sexes. The annual percent changes (APCs) were calculated for each segment. Visualization of the changes in mortality rate of colorectal cancer death rates by 16 geographic areas in both sexes between 2000-2004 and 2009-2013 were also conducted. RESULTS: CRC mortality rates of men showed decreasing trend after increase in Daegu, Gyeongsangnam-do, and Chungcheongbuk-do between 2000 and 2013 based on the joinpoint model, while Gwangju, Jeollabuk-do, Jeollanam-do, and Gyeongsangbuk-do showed increase in CRC mortality during the same period. For women, CRC mortality of Seoul, Incheon, Daejeon, and Gyeongsangnam-do started to decrease in 2005, 2003, 2007, and 2006, respectively. The mortality rate for CRC in the eastern regions, which had relatively low rates of CRC among men in 2000 through 2004, reached a level similar to that in the northwestern regions of 2009 through 2013, while the highest CRC mortality rates in women was observed in Chungcheongbuk-do. CONCLUSIONS: Reduction in CRC mortality varied across 16 metropolitan cities and provinces in men, and the visualization pattern showed that the east side of South Korea had the least progress in mortality reduction.

Attitudes of the General Public, Cancer Patients, Family Caregivers, and Physicians Toward Advance Care Planning: A Nationwide Survey Before the Enforcement of the Life-Sustaining Treatment Decision-Making Act.

CONTEXT: To respect a patient's wish for end-of-life care, "the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life" was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. OBJECTIVES: The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. METHODS: A multicenter, nationwide cross-sectional study was conducted, a survey regarding ACP among four groups that would have different positions and experiences: 1001 cancer patients, 1006 family caregivers, 928 physicians, and 1241 members of the general public. RESULTS: A total of 15% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 64% of the general population, above 72% of the patients and caregivers, and 97% of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. CONCLUSION: Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.