Ivana Durcinoska

Background: Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. Objective: This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. Methods: Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. Results: From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). Conclusions: Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 International Registered Report Identifier (IRRID): RR2-10.1186/s12885-018-4729-3

BACKGROUND Despite the acceptability and efficacy of e–patient-reported outcome (ePRO) systems, implementation in routine clinical care remains challenging. OBJECTIVE This pragmatic trial implemented the PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care) web-based system into existing clinical workflows and evaluated its effectiveness among a diverse population of patients with cancer. METHODS Adult patients with solid tumors receiving active treatment or follow-up care in four cancer centers were enrolled. The PROMPT-Care intervention supported patient management through (1) monthly off-site electronic PRO physical symptom and psychosocial well-being assessments, (2) automated electronic clinical alerts notifying the care team of unresolved clinical issues following two consecutive assessments, and (3) tailored online patient self-management resources. Propensity score matching was used to match controls with intervention patients in a 4:1 ratio for patient age, sex, and treatment status. The primary outcome was a reduction in emergency department presentations. Secondary outcomes were time spent on chemotherapy and the number of allied health service referrals. RESULTS From April 2016 to October 2018, 328 patients from four public hospitals received the intervention. Matched controls (n=1312) comprised the general population of patients with cancer, seen at the participating hospitals during the study period. Emergency department visits were significantly reduced by 33% (P=.02) among patients receiving the intervention compared with patients in the matched controls. No significant associations were found in allied health referrals or time to end of chemotherapy. At baseline, the most common patient reported outcomes (above-threshold) were fatigue (39%), tiredness (38.4%), worry (32.9%), general wellbeing (32.9%), and sleep (24.1%), aligning with the most frequently accessed self-management domain pages of physical well-being (36%) and emotional well-being (23%). The majority of clinical feedback reports were reviewed by nursing staff (729/893, 82%), largely in response to the automated clinical alerts (n=877). CONCLUSIONS Algorithm-supported web-based systems utilizing patient reported outcomes in clinical practice reduced emergency department presentations among a diverse population of patients with cancer. This study also highlighted the importance of (1) automated triggers for reviewing above-threshold results in patient reports, rather than passive manual review of patient records; (2) the instrumental role nurses play in managing alerts; and (3) providing patients with resources to support guided self-management, where appropriate. Together, these factors will inform the integration of web-based PRO systems into future models of routine cancer care. CLINICALTRIAL Australian New Zealand Clinical Trials Registry ACTRN12616000615482; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370633 INTERNATIONAL REGISTERED REPORT RR2-10.1186/s12885-018-4729-3

Background: The adoption of Patient Reported Outcome Measures (PROMs) in cancer care has been widely advocated, but little is known about the evidence for the implementation of PROMs in practice. Qualitative research captures the perspectives of health professionals as end-users of PROMs and can be used to inform adoption efforts. This paper presents a systematic review and synthesis of qualitative research conducted to address the question: What are the attitudes of health professionals towards PROMs in oncology, including any barriers and facilitators to the adoption of PROMS, reported in qualitative evidence? Methods: Systematic searches of qualitative evidence were undertaken in four databases and reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies published in English between 1998 and 2018, which reported qualitative findings about the attitudes of health professionals working in oncology towards PROMs were eligible. Studies were assessed using the Critical Appraisal Skills Programme’s Qualitative Research Checklist. A sentiment analysis was conducted on primary text to examine the polarity (neutral, positive or negative) of health professionals’ views of PROMs. Qualitative meta-synthesis was conducted using a constant comparative analysis. Results: From 1227 articles after duplicates were removed, with 1014 excluded against the screening criteria, 213 full text articles remained and were assessed; 34 studies met the inclusion criteria and were included. The majority of studies were of good quality. Sentiment analysis on primary text demonstrated an overall positive polarity from the expressed opinions of health professionals. The meta-synthesis showed health professionals’ attitudes in four domains: identifying patient issues and needs using PROMs; managing and addressing patient issues; the care experience; and the integration of PROMs into clinical practice. Conclusions: From the accounts of health professionals, the fit of PROMs with existing practice, how PROMs are valued, capacity to respond to PROMs and the supports in place, formed the key factors which may impede or promote adoption of PROMs in routine practice. To assist policy-makers and services involved in implementing these initiatives, further evidence is required about the relationship between PROMs data collection and corresponding clinical actions. Trial registration: International Prospective Register of Systematic Reviews (PROSPERO) CRD42019119447, 6th March, 2019.

Introduction: Patient-reported Outcomes for Personalized Treatment and Care (PROMPT-Care) is the first eHealth system in Australia that is fully electronically integrated into hospital oncology information systems, enabling real-time, routine collection of patient-reported outcomes (PROs) to support and enable cancer patients to achieve and maintain improved health, well-being, and cancer outcomes. Five previously published papers detail the impetus for developing this eHealth system, its development, and testing of its acceptability and feasibility, the development of algorithms to standardize the cancer care pathways which underpin patient care, and the protocol for evaluating the efficacy of PROMPT-Care. Methods: This manuscript provides “how-to” guidance to inform future system development, focusing on selecting relevant PROs and measuring them in cancer patients, score interpretation, and determining recommended care in response to scores which are above the predetermined threshold. Discussion: Electronic PRO systems are increasingly used in cancer clinical care settings, with the potential to support timely patient-centered care when implemented appropriately. Key Points: PRO selection should consider patient response burden, and prioritizing PROs that are amenable to clinical intervention. Having clear, evidence-based, care pathways, and actionable recommendations in response to above-threshold PRO scores facilitate PRO integration into the clinical workflow. Centers should determine thresholds for clinical action for each PRO which provide an acceptable balance between false positives and false negatives; and develop care pathway recommendations which consider the availability of local services and resources, are feasible in the clinical setting, clear, concise, manageable, based on evidence-based guidelines, and adaptable to local environments.

Objectives: This study aimed to describe the levels of health literacy and experience of care coordination among Chinese migrant patients with cancer and their carers in Australia, and to examine factors associated with these.Methods: Patients' self‐reported data were collected using the Health Literacy and Cancer Care Coordination questionnaires. We conducted multivariate linear regression analyses to investigate predictors of patients' health literacy and their care experience. Canonical correlation analysis was used to examine the relationship between patients' health literacy and their care experience.Results: A total of 68 patients and eight carers participated in the survey. Patients and carers reported similar levels of health literacy, with the lowest scores being in the “Having sufficient information to manage health” and “Navigating the health system” subscales. Gender (P = 0.026, partial η² = 0.281) and educational attainment (P = 0.015, partial η² = 0.250) had significant and large effects on patients' health literacy, after controlling for each other. Educational attainment showed a significant and medium association with patients' experience of cancer care coordination (P = 0.041, partial η² = 0.101). A large and positive correlation was found between patients' health literacy and experience of cancer care coordination (canonical correlation = 0.81).Conclusions: Our findings reveal the health literacy and care coordination needs of Chinese migrant patients with cancer in Australia, especially those with lower educational attainment. Future efforts are necessary to enhance Chinese migrants' health literacy and establish an accessible and easy‐to‐navigate care environment.

Routine assessment and clinical utilisation of patient-reported outcome (PRO) measures can lead to improved patient outcomes. The PROMPT-Care eHealth system facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions, patient self-management, and shared care. Pilot testing demonstrated acceptability and feasibility of PROMPT-Care Version 1.0. This study aims to implement PROMPT-Care Version 2.0 and determine its efficacy in reducing emergency department (ED) presentations, and improving chemotherapy delivery and health service referrals, compared to usual care. Groups eligible to participate in the intervention arm of this controlled trial are patients receiving cancer care (including follow-up). PROMPT-Care patients will complete monthly assessments (distress, symptoms, unmet needs) until voluntary withdrawal or death. In Version 1.0, the care team accessed patients’ clinical feedback reports in ‘real time’ to guide their care, and patients received links to support their self-management, tailored to their PRO responses. Version 2.0 was extended to include: i) an additional alert system notifying the care team of ongoing unresolved clinical issues, ii) patient self-management resources, and iii) an auto-populated Treatment Summary and Survivorship Care Plan (SCP). The control population will be patients extracted from hospital databases of the general cancer patient population who were seen at the participating cancer therapy centres during the study period, with a ratio of 1:4 of intervention to control patients. A minimum sample size of 1760 (352 intervention and 1408 control) patients will detect a 14% reduction in the number of ED presentations (primary outcome) in the PROMPT-Care group compared with the control group. Intervention patients will provide feedback on system usability and value of the self-management materials; oncology staff will provide feedback on usefulness of PROMPT-Care reports, response to clinical alerts, impact on routine care, and usefulness of the SCPs; and GPs will provide feedback on the usefulness of the SCPs and attitudes towards shared-care models of survivorship care planning. This study will inform the PROMPT-Care system’s impact on healthcare utilisation and utility as an alternative model for ongoing supportive care. Australian New Zealand Clinical Trials Registry ( ACTRN12616000615482 ) on 12th May 2016 ( www.anzctr.org.au ).

Improving the coordination of care for people with lung cancer is a health priority. This study aimed to tailor an existing care coordination survey for a lung cancer population, investigate coordination experiences for patients who had received hospital-based treatment and identify any factors that may be associated with poor care coordination.

Introduction For immigrants diagnosed with cancer, the stress of a cancer diagnosis and treatment can be amplified by unfamiliarity with the health system, lack of culturally and linguistically appropriate information, and inability to communicate efficiently and accurately with the treating team. Lower levels of health literacy may be one factor underlying poorer outcomes among immigrant patients with cancer, but there have been few studies exploring this issue to date. This study aims to investigate the levels and correlates of health literacy in two immigrant populations affected by cancer and their English-speaking counterparts. Methods and analysis Levels and correlates of health and eHealth literacy will be evaluated using a cross-sectional self-report questionnaire. Eligible, English, Arabic and Vietnamese patients with cancer and survivors (n=50 of each language group) will be invited to complete a questionnaire in their preferred language containing the Health Literacy Questionnaire, the eHealth Literacy Scale and study-specific questions assessing potential correlates of poor health literacy, including gender, age, education level, acculturation into Australian society and number of chronic illnesses. Multivariable logistic regression will be used to identify potential approaches to support effective communication with healthcare providers and preferred methods for assessing patient-reported outcomes (PROs) to support culturally appropriate cancer care. The outcomes of this study will be used to better meet the needs of immigrant populations, including the tailoring of interventions appropriate to different health literacy levels. Outcomes will also inform strategies for PRO assessment to inform unmet needs and to address Australian healthcare system challenges to meet the needs of immigrant populations. Ethics and dissemination The study was reviewed and approved by the Human Research Ethics Committee of South Western Sydney Local Health District (approval number: HREC/16/LPOOL/650). Results from the study will aim to be published at international conferences and in peer-reviewed journals.

The incidence and survival rates for colorectal cancer in Australia are among the highest in the world. With population growth and ageing there are increasing numbers of colorectal cancer survivors in the community, yet little is known of their ongoing follow up and survivorship care experiences. This study investigated patterns and predictors of follow up and survivorship care received and recommended for adults with colorectal cancer in New South Wales (NSW), Australia. Cross-sectional analysis within the NSW Bowel Cancer Care Survey, a population-based cohort of adults diagnosed with colorectal cancer between April 2012 and May 2013 in NSW. One year after diagnosis, participants completed a study specific questionnaire about their follow up and survivorship care experience and plans. Logistic regression was used to identify independent predictors of guideline-recommended care. Of 1007 eligible people, 560 (56%) participated in the NSW Bowel Cancer Care Survey with 483 (86% of study participants, 48% of invited sample) completing the survivorship survey. Among these 483 participants, only 110 (23%, 95% Confidence Interval CI 19–27%) had received a written follow up plan, with this more common among migrants, non-urban dwellers and those with little experience of the health system. Of 379 (78%) people treated with curative intent, most were receiving ongoing colorectal cancer follow up from multiple providers with 28% (23–32%) attending three or more different doctors. However, less than half had received guideline-recommended follow-up colonoscopy (46%, CI 41–51%) or carcino-embryonic antigen assay (35%, CI 30–40%). Socio-economic advantage was associated with receipt of guideline-recommended care. While participants reported high interest in improving general health and lifestyle since their cancer diagnosis, few had received advice about screening for other cancers (24%, CI 19–28%) or assistance with lifestyle modification (30%, CI 26–34%). Less than half (47%, CI 43–52%) had discussed their family’s risk of cancer with a doctor since their diagnosis. Survivorship care was highly variable, with evident socioeconomic disparities and missed opportunities for health promotion.