Laura Ashley

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.

Integrating cancer survivors' experiences into UK cancer registries: design and development of the ePOCS system (electronic Patient-reported Outcomes from Cancer Survivors)

Background:Understanding the psychosocial challenges of cancer survivorship, and identifying which patients experience ongoing difficulties, is a key priority. The ePOCS (electronic patient-reported outcomes from cancer survivors) project aims to develop and evaluate a cost-efficient, UK-scalable electronic system for collecting patient-reported outcome measures (PROMs), at regular post-diagnostic timepoints, and linking these with clinical data in cancer registries.Methods:A multidisciplinary team developed the system using agile methods. Design entailed process mapping the systems constituent parts, data flows and involved human activities, and undertaking usability testing. Informatics specialists built new technical components, including a web-based questionnaire tool and tracking database, and established component-connecting data flows. Development challenges were overcome, including patient usability and data linkage and security.Results:We have developed a system in which PROMs are completed online, using a secure questionnaire administration tool, accessed via a public-facing website, and the responses are linked and stored with clinical registry data. Patient monitoring and communications are semiautomated via a tracker database, and patient correspondence is primarily Email-based. The system is currently honed for clinician-led hospital-based patient recruitment.Conclusions:A feasibility test study is underway. Although there are possible challenges to sustaining and scaling up ePOCS, the system has potential to support UK epidemiological PROMs collection and clinical data linkage.

Are alexithymia and emotional characteristics of disclosure associated with blood pressure reactivity and psychological distress following written emotional disclosure

OBJECTIVES This study had three aims: 1) to investigate whether cardiovascular responses to laboratory stress and levels of emotional distress were attenuated following written emotional disclosure; 2) to test, in addition to the potential main effects, whether levels of alexithymia moderated the impact of writing; and 3) to examine whether alexithymics who successfully disclosed emotion in their essays would experience positive effects following writing. DESIGN AND METHODS Eighty-seven participants wrote about their most stressful life experience or about a non-stressful experience, for 15 minutes, over 3 consecutive days. Two weeks later, blood pressure (BP) responses to laboratory stress and levels of emotional distress were assessed. Emotional characteristics of the disclosure essays were analysed with the Linguistic Inquiry and Word Count programme and alexithymia was assessed at baseline using the Toronto Alexithymia Scale-20. RESULTS Analyses found no evidence in support of the main effects of disclosure on cardiovascular responses to stress or on emotional distress. However, alexithymia was found to moderate the impact of writing such that non-alexithymic participants in the experimental condition reported significantly lower emotional distress 2 weeks later. In addition, alexithymic participants who disclosed a greater number of negative when compared with positive emotion words exhibited reduced systolic and diastolic responses to stress. Conversely, non-alexithymic participants who disclosed more positive and less negative emotion words displayed attenuated BP reactivity to stress. CONCLUSIONS The results of this exploratory study are important as they highlighted, in the absence of main effects, the importance of examining potential moderators of the emotional writing process. These findings may have implications for the development of cardiovascular health interventions.

Illness perceptions within 6 months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15 months post-diagnosis.

Studies have found that illness perceptions explain significant variance in health outcomes in numerous diseases. However, most of the research is cross‐sectional and non‐oncological. We examined, for the first time in breast, colorectal and prostate cancer patients, if cognitive and emotional illness perceptions near diagnosis predict future multidimensional health‐related quality of life (HRQoL).

Costs of cancer care for use in economic evaluation: a UK analysis of patient-level routine health system data

Background:The rising financial burden of cancer on health-care systems worldwide has led to the increased demand for evidence-based research on which to base reimbursement decisions. Economic evaluations are an integral component of this necessary research. Ascertainment of reliable health-care cost and quality-of-life estimates to inform such studies has historically been challenging, but recent advances in informatics in the United Kingdom provide new opportunities.Methods:The costs of hospital care for breast, colorectal and prostate cancer disease-free survivors were calculated over 15 months from initial diagnosis of cancer using routinely collected data within a UK National Health Service (NHS) Hospital Trust. Costs were linked at patient level to patient-reported outcomes and registry-derived sociodemographic factors. Predictors of cost and the relationship between costs and patient-reported utility were examined.Results:The study population included 223 breast cancer patients, 145 colorectal and 104 prostate cancer patients. The mean 15-month cumulative health-care costs were £12 595 (95% CI £11 517–£13 722), £12 643 (£11 282–£14 102) and £3722 (£3263–£4208), per-patient respectively. The majority of costs occurred within the first 6 months from diagnosis. Clinical stage was the most important predictor of costs for all cancer types. EQ-5D score was predictive of costs in colorectal cancer but not in breast or prostate cancer.Conclusion:It is now possible to evaluate health-care cost using routine NHS data sets. Such methods can be utilised in future retrospective and prospective studies to efficiently collect economic data.

Psychometric evaluation of the revised Illness Perception Questionnaire (IPQ-R) in cancer patients: confirmatory factor analysis and Rasch analysis.

OBJECTIVE To provide new insights into the psychometrics of the revised Illness Perception Questionnaire (IPQ-R) in cancer patients. To undertake, for the first time using data from breast, colorectal and prostate cancer patients, a confirmatory factor analysis (CFA) to assess the validity of the IPQ-Rs core seven-factor structure. Also, for the first time in any illness group, to undertake Rasch analysis to explore the extent to which the IPQ-R factors form unidimensional scales, with linear measurement properties and no Differential Item Functioning (DIF). METHODS Patients with potentially curable breast, colorectal or prostate cancer, within 6months post-diagnosis, completed the IPQ-R online (N=531). CFA was conducted, including multi-sample analysis, and for each IPQ-R factor fit to the Rasch model was assessed by examining, amongst other things, item fit, DIF and unidimensionality. RESULTS The CFA showed a moderate fit of the data to the IPQ-R model, and stability across diagnosis, although fit was significantly improved following the removal of selected items. All seven factors achieved fit to the Rasch model, and exhibited unidimensionality and minimal DIF, although in most cases this was after some item rescoring and/or deletion. In both analyses, IPQ-R items 12, 18 and 24 were indicated as misfitting and removed. CONCLUSION Given the rigorous standard of Rasch measurement, and the generic nature of the IPQ-R, it stood up well to the demands of the Rasch model in this study. Importantly, the results show that with some relatively minor, pragmatic modifications the IPQ-R could possess Rasch-standard measurement in cancer patients.

Improving the Safety of Chemotherapy Administration: An Oncology Nurse-Led Failure Mode and Effects Analysis

PURPOSE/OBJECTIVES To assess and improve the safety of hospital-based adult chemotherapy administration. DESIGN Prospective, systems-focused clinical risk assessment. SETTING An adult inpatient and outpatient oncology unit in a large urban hospital in the United Kingdom. SAMPLE 8-person nurse-led multidisciplinary team, which included managerial staff and patient safety researchers. METHODS Failure mode and effects analysis (FMEA), a prospective, systems-focused risk assessment methodology, was undertaken in biweekly team meetings and included mapping the chemotherapy administration process, identifying and numerically prioritizing potential errors (failure modes) for each process step, and generating remedial strategies to counteract them. MAIN RESEARCH VARIABLES The analysis aimed to identify chemotherapy administration failure modes and to generate remedial strategies to address them. User feedback on the FMEA process also was collected. FINDINGS Several specific chemotherapy failure modes were identified, the majority of which had not previously been recognized, and several novel strategies to counteract them were generated. Many of the strategies were specific, environment-focused actions, which are simple, quick, and inexpensive to implement; however, more substantive, longer-term initiatives also were generated. User feedback generally was very positive, and the process of undertaking the analysis improved multidisciplinary teamwork and communication. CONCLUSIONS Although time and resource intensive, FMEA is a useful safety improvement tool. IMPLICATIONS FOR NURSING Nurses should be aware of and informed about FMEA as a tool they can use in partnership with management and other disciplines to proactively and collectively improve the safety of high-risk oncology procedures such as chemotherapy administration.

Disparities in psychosocial cancer care: a report from the International Federation of Psycho-oncology Societies

The aim of the study was to understand the characteristics of the International Federation of Psycho‐oncology Societies (FPOS) and possible disparities in providing psychosocial care in countries where psycho‐oncology societies exist.

The economic burden of cancer in the UK: a study of survivors treated with curative intent

We aim to describe the economic burden of UK cancer survivorship for breast, colorectal and prostate cancer patients treated with curative intent, 1 year post‐diagnosis.

Traditional and Rasch psychometric analyses of the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire in shorter-term cancer survivors 15 months post-diagnosis

OBJECTIVE The aim of this paper is to provide new insights into the psychometrics of the Quality of Life in Adult Cancer Survivors (QLACS) questionnaire, originally developed for longer-term survivors 5+years post-diagnosis. Specifically, to examine the classic psychometric properties of QLACS in a sample of shorter-term survivors, and to undertake Rasch analysis to explore the extent to which the Generic and Cancer-Specific summary scales (and separately-analysed Benefits of cancer domain) are unidimensional, with linear measurement properties and no differential item functioning (DIF). METHODS Patients with potentially curable breast, colorectal or prostate cancer completed QLACS 15 months post-diagnosis (N=407). Score distributions, floor and ceiling effects, internal reliability, and feasibility (completion time and missing data) were examined. Rasch analysis included examination of item fit, DIF and unidimensionality. RESULTS The QLACS domains and summary scales had very similar score distributions and classic psychometric properties (no ceiling effects, majority no floor effects, acceptable reliability) to those found in development work with longer-term survivors. Median completion time was 10 min and total missing data 2.3%. The Generic summary scale contained several misfitting items and exhibited multidimensionality. The Cancer-Specific summary scale and Benefits domain showed fit to the Rasch model and demonstrated unidimensionality and no DIF, with just one or no item modifications respectively. CONCLUSION QLACS demonstrates similarly good classic psychometric properties among shorter-term as among longer-term survivors, and has good feasibility. The Cancer-Specific summary scale and Benefits domain showed an impressive degree of fit to the Rasch model, although the validity of computing the Generic summary score was not supported.