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Simple Summary: Patient-reported outcome measures (PROMs) are a useful way to assess the subjective experiences of health-related quality of life, functional status, symptoms, and other outcomes in childhood cancer survivors. In survivorship care, PROMs can be used to monitor health status and inform medical decision making. This article provides 10 important considerations for clinicians when they are assessing patient-reported outcomes for childhood cancer survivors. From choosing the right measure to selecting a strategy for clinical response, the purpose of these considerations is to support clinicians in implementing PROMs in their practice while keeping in mind some of the practical barriers and solutions of using PROMs with childhood cancer survivors. We end with an example of a framework for integrating PROMs into the clinical workflow that uses cutting-edge technologies (e.g., mHealth, natural language processing, and machine learning) to minimize interruptions to the clinical workflow and maximize the powerful utility of PROMs in cancer survivorship care. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Endoscopic submucosal dissection (ESD) for early gastric cancer (EGC) is expected to provide better long-term health-related quality of life (HRQOL) by preserving the entire stomach. We aimed to compare serial changes in HRQOL characteristics between patients who underwent ESD versus surgery for EGC.Methods: A gastric cancer patient cohort was prospectively enrolled from 2004 to 2007. HRQOL of 161 EGC patients was prospectively assessed using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC-QLQ-C30) and the stomach cancer-specific module EORTC-QLQ-STO22 at baseline (i.e., diagnosis) and at 1, 6, 12, 18, and 24 months of post-treatment.Results: Of 161 patients, 48 (29.8%) underwent ESD and 113 (70.2%) underwent surgery. HRQOL parameters of ESD patients were similar to or better than baseline values. At 1-month post-treatment, the surgery group had significantly poorer scores than the ESD group (P < 0.05) for factors except emotional and cognitive functioning, financial problems, anxiety, and hair loss. However, most of the HRQOL parameters in the surgery group improved during the first post-treatment year, with between-group differences becoming insignificant. Only five parameters (physical functioning, eating restriction, dysphagia, diarrhea, and body image) remained significantly better in the ESD group than the surgery group for > 1-year post-treatment (P < 0.05). The surgery group had significantly higher treatment-associated complications than the ESD group (15.0 vs. 2.1%; P = 0.017). The overall survival was not different between the both groups (5-year overall survival rates, 97.7% in the ESD group vs. 99.1% in the surgery group; P = 0.106 by the log-rank test).Conclusion: Compared with surgery, ESD can provide better HRQOL benefits for EGC patients, especially during the early post-treatment period. However, surgical treatment should not be rejected only due to the concern about HRQOL impairments because most of them improved during follow-up periods. [ABSTRACT FROM AUTHOR]

Purpose: The aim of this study was to develop and validate a short form (SF) of the Smart Management Strategy for Health Assessment Tool (SAT) for cancer patients.Methods: Data for item reduction were derived from cancer patient data (n = 300) previously used to develop the original SAT. We used regression methods to select and score the new SAT-SF. To assess the instrument's reliability and validity, we recruited another 354 cancer patients from the same hospitals who were older than 18 years and accustomed to using the web. All results were compared with that of the long-form SAT (original SAT).Results: The SAT-SF used is the shorter version, a 30-item (from the original 91-item) instrument, to measure cancer patient's health. The 30-item SAT-SF explained 97.7% of total variance of the full 91-item long-form SAT. All SAT-SF subscales demonstrated a high reliability with good internal consistency compared with the original SAT. The total short-form scores of the three SAT sets (SAT-Core, SAT-Preparation, SAT-Implementation) differentiated participant groups according to their stage of goal implementation and percentage of actions taken in the 10 Rules for Highly Effective Health Behavior. We found acceptable correlations between the three SAT-SF sets and the additional assessment tools compared with the original SAT.Conclusions: The 30-item SAT-SF had a satisfactory internal consistency and validity for cancer patients with minimal loss of information compared with the original SAT. [ABSTRACT FROM AUTHOR]

Objective: The use of information communication technology (ICT)-based tailored health management program can have significant health impacts for cancer patients. Information provision, health-related quality of life (HRQOL), and decision conflicts were analyzed for their relationship with need for an ICT-based personalized health management program in Korean cancer survivors.Methods: The health program needs of 625 cancer survivors from two Korean hospitals were analyzed in this cross-sectional study. Multivariate logistic regression was used to identify factors related to the need for an ICT-based tailored health management system. Association of the highest such need with medical information experience, HRQOL, and decision conflicts was determined. Furthermore, patient intentions and expectations for a web- or smartphone-based tailored health management program were investigated.Results: Cancer survivors indicated high personalized health management program needs. Patients reporting the highest need included those with higher income (adjusted odds ratio [aOR], 1.70; 95% [confidence interval] CI, 1.10-2.63), those who had received enough information regarding helping themselves (aOR, 1.71; 95% CI, 1.09-2.66), and those who wished to receive more information (aOR, 1.59; 95% CI, 0.97-2.61). Participants with cognitive functioning problems (aOR, 2.87; 95%CI, 1.34-6.17) or appetite loss (aOR, 1.77; 95% CI, 1.07-2.93) indicated need for a tailored health care program. Patients who perceived greater support from the decision-making process also showed the highest need for an ICT-based program (aOR, 0.49; 95% CI, 0.30-0.82).Conclusions: We found that higher income, information provision experience, problematic HRQOL, and decisional conflicts are significantly associated with the need for an ICT-based tailored self-management program. [ABSTRACT FROM AUTHOR]

Background: In this study, we aimed to develop and validate an instrument that could be used by patients with cancer to evaluate their quality of palliative care. Methods: Development of the questionnaire followed the four-phase process: item generation and reduction, construction, pilot testing, and field testing. Based on the literature, we constructed a list of items for the quality of palliative care from 104 quality care issues divided into 14 subscales. We constructed scales of 43 items that only the cancer patients were asked to answer. Using relevance and feasibility criteria and pilot testing, we developed a 44-item questionnaire. To assess the sensitivity and validity of the questionnaire, we recruited 220 patients over 18 years of age from three Korean hospitals. Results: Factor analysis of the data and fit statistics process resulted in the 4-factor, 32-item Quality Care Questionnaire-Palliative Care (QCQ-PC), which covers appropriate communication with health care professionals (ten items), discussing value of life and goals of care (nine items), support and counseling for needs of holistic care (seven items), and accessibility and sustainability of care (six items). All subscales and total scores showed a high internal consistency (Cronbach alpha range, 0.89 to 0.97). Multi-trait scaling analysis showed good convergent (0.568–0.995) and discriminant (0.472–0.869) validity. The correlation between the total and subscale scores of QCQ-PC and those of EORTC QLQ-C15-PAL, MQOL, SAT-SF, and DCS was obtained. Conclusion: This study demonstrates that the QCQ-PC can be adopted to assess the quality of care in patients with cancer. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]