Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Background

Routine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries.

Objective

This study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis.

Methods

Patients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system.

Results

ePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month.

Conclusions

The informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.     

Prospective assessment after pediatric cardiac ablation: demographics, medical profiles, and initial outcomes

INTRODUCTION: A multicenter prospective study was designed and implemented to assess the short- and longer-term results and risks associated with radiofrequency (RF) ablation in children. METHODS AND RESULTS: Patients recruited for the study were aged 0 to 16 years with supraventricular tachycardia due to accessory pathways or AV nodal reentrant tachycardia (AVNRT), excluding patients with nontrivial congenital heart disease. A national registry also was established, and contributing centers were encouraged to enroll all pediatric patients, aged 0 to 21 years, undergoing ablation at their center. This report summarizes acute results of these procedures. For analysis, subjects were divided into three groups: the prospective cohort (n = 481), cohort-eligible registry participants (n = 504), and not cohort eligible registry participants (n = 1,776). Prospectively enrolled cohort patients were similar to cohort-eligible patients in terms of demographic and other patient characteristics. Overall success rates for RF ablation were high (95.7%), with higher success rates for left-sided and particularly left free-wall pathways (97.8%) than right free-wall pathways (90.8%). Complications of both electrophysiologic study and RF ablation were infrequent (4.2% and 4.0%, respectively), and there were no deaths. AV block was uncommon overall (1.2%) and was limited to ablation in AVNRT (2.1%) and septal accessory pathways (3.0%). CONCLUSION: Despite the multicenter and prospective design, the study demonstrates high success rates and low complication rates, which are comparable to prior single-center retrospective studies. These results may serve as the current best benchmark for expected results in the pediatric population, aged 0 to 16 years, both in terms of acute success rates and the occurrence of complications.     

Ten-year survival and factors associated with increased mortality in patients admitted for acute decompensated heart failure in Thailand

INTRODUCTIONData on the long-term outcomes of Asian patients admitted for acute decompensated heart failure is scarce. The objectives of this study were to determine short-term, intermediate-term and long-term survival among patients admitted for acute decompensated heart failure in Thailand, and to identify factors independently associated with increased mortality.METHODSPatients who were admitted with a primary diagnosis of heart failure were enrolled in the Thai Acute Decompensated Heart Failure Registry (ADHERE) from 18 hospitals located across Thailand during 2006. Medical record data was collected according to ADHERE protocol. Mortality data was collected from death certificates on file at the Thailand Bureau of Registration Administration.RESULTSA total of 1,451 patients were included. The mean age of the patients was 63.7 ± 14.4 years, and 49.7% were male. One-year, five-year and ten-year mortality rates in Thai patients admitted for acute decompensated heart failure were 28.0%, 58.2% and 73.3%, respectively. Independent predictors of increased mortality were identified. There were more cardiovascular-related deaths than non-cardiovascular-related deaths (54.6% vs. 45.4%, respectively).CONCLUSIONSThe ten-year mortality rate in Thai patients admitted for acute decompensated heart failure was 73.3%. Many factors were found to be independently associated with increased mortality, including left ventricular ejection fraction.     

心律失常介入治疗数据库平台建设：基本原理和设计方案

背景 临床注册研究是近期国内外学术界兴起的一种新的临床研究形式.美国国家心血管病数据注册系统于2005年开展了针对植入型心律转复除颤器（ICD）的注册.心律失常介入治疗的数据库目的是在依托国家心血管病中心筹建的统一数据库平台基础上,开展植入型器械治疗注册系统和导管消融治疗注册系统.基本原理 根据研究要求,建设我国心律失常介入治疗信息与研究平台的专用网页.建立符合国际标准的电子化、信息化临床研究数据管理和统计分析平台,对研究中各个子项目的数据进行数据监查、数据管理、质量控制及统计分析.设计方案 为前瞻性的、多中心的、开放性注册研究,共有24家医院参加研究.依托国家心血管病中心筹建的统一数据库平台,设计心律失常介入治疗的数据注册系统,包括植入型器械治疗注册系统以及导管消融治疗注册系统.前者包括心脏起搏器、ICD和心脏再同步治疗（CRT）的植入登记数据库和随访数据库.后者包括阵发性室上性心动过速、室性快速心律失常和房性快速心律失常的手术登记数据库和随访数据库.结论 心律失常介入治疗的数据库平台建设将有助于规范心律失常介入治疗的临床行为,实现网络数据库与临床工作平台的合理对接,提高医疗质量和医疗安全.     

Female breast cancer statistics of 2010 in China: estimates based on data from 145 population-based cancer registries

Background

The aim of the study is to provide incidence and mortality data of female breast cancer at national level of China in 2010.

Methods

A total of 145 population-based cancer registries submitted qualified cancer incidence and mortality data to National Cancer Registration Center of China. Based on the qualified cancer registries’ data, we estimated the overall breast cancer incidence and mortality data of China in 2010 and reported breast cancer statistics by age and geographical area.

Results

The estimated number of female breast cancer cases was about 208 thousand. The crude incidence rate, age-standardized rate by China and World population were 32.43 per 100,000, 25.89 per 100,000 and 24.20 per 100,000, respectively. The incidence rates were higher in urban area than in rural area. And the incidence rates in Eastern area and Middle area were similar and higher that those in Western areas. The estimated number of female breast cancer death in 2010 of China was about 55.5 thousand. The crude, age-standardized mortalities by China population and World population were 8.65 per 100,000, 6.56 per 100,000 and 6.36 per 100,000, respectively. The mortality rates by geographical area had similar pattern to the incidence rates.

Conclusions

Breast cancer is still a major health burden for Chinese women especially in urban area. Prevention strategies such as weight control, high-quality screening and diagnosis may help control the disease.     

Acute promyelocytic leukaemia is characterized by stable incidence and improved survival that is restricted to patients managed in leukaemia referral centres: a pan‐Canadian epidemiological study

Timely diagnosis and care are major determinants of the outcome in acute promyelocytic leukaemia (APL), a malignancy whose incidence may be increasing. The Canadian Cancer Registry (CCR) and health system represent valuable settings to study APL epidemiology. We analysed the CCR, which contains data on all Canadians with APL. To provide clinical information lacking in the CCR, we obtained data from five leukaemia referral centres during a similar time period. Between 1993 and 2007, there were 399 APL in Canada. Age‐standardized incidence was 0·083/100 000 and was stable over time. The early death (ED) rate was 21·8% (10·6% in patients <50 years old and 35·5% for those aged >50 years), with no improvement over time. Five‐year overall survival (OS) was 54·6% (73·3% in patients <50 years; 29·1% older patients). In the referral cohort, 131 patients were diagnosed between 1999 and 2010. ED was 14·6% and 2‐year OS was 76·5%. Within this cohort, ED and OS improved over time, although advanced patient age remained an adverse determinant of OS. In Canada, APL incidence is unexpectedly low and temporally stable. ED was higher than reported in clinical trials, but similar to reports from other registries. In contrast, ED was lower in referral centres and improved with time.