What are the attitudes of health professionals regarding patient reported outcome measures (PROMs) in oncology practice? A mixed-method synthesis of the qualitative evidence.

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.

Web-Based Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care): Multicenter Pragmatic Nonrandomized Trial.

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.

Interpreting and Acting on the PRO Scores From the Patient-reported Outcomes for Personalized Treatment and Care (PROMPT-Care) eHealth System.

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.

Health literacy and cancer care coordination in Chinese migrant patients and their carers: A cross-sectional survey.

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.

Patients' experience of lung cancer care coordination: a quantitative exploration.

PURPOSE: 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. METHODS: We conducted a cross-sectional survey of lung patients within two tertiary hospitals in Sydney, Australia. The Cancer Care Coordination Questionnaire for Patients (CCCQ-P) is a psychometrically valid and reliable survey originally developed for colorectal cancer. We pilot tested a survey adaptation with lung cancer patients, support group members and medical specialists (n = 49). A revised survey was mailed to eligible patients via their medical specialist. RESULTS: Fifty-three of 118 eligible participants (45%) completed the CCCQ-P; most had early-stage disease and were about 70 years old. Overall, participants reported positive experiences of care coordination (mean total score 78.1), with high scores on communication and navigation subscales. The most problematic areas related to administrative aspects of care coordination and communication and information provision. Two patient groups (those residing in regional and rural areas, or no experience with the health system prior to diagnosis) reported significantly lower scores on the navigation subscale. CONCLUSIONS: This study found that lung cancer patients' experience of care coordination was positive, but highlighted the need for strategies to assist patients living in rural areas, and those with no experience of the health care system. The CCCQ-P survey instrument can be used in future lung cancer studies.

Patterns of follow up and survivorship care for people with colorectal cancer in new South Wales, Australia: a population-based survey.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: Survivorship care was highly variable, with evident socioeconomic disparities and missed opportunities for health promotion.

Study protocol for a controlled trial of an eHealth system utilising patient reported outcome measures for personalised treatment and care: PROMPT-Care 2.0.

BACKGROUND: 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. METHODS: 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. DISCUSSION: This study will inform the PROMPT-Care system's impact on healthcare utilisation and utility as an alternative model for ongoing supportive care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ( ACTRN12616000615482 ) on 12th May 2016 ( www.anzctr.org.au ).

Patterns and predictors of colorectal cancer care coordination: A population-based survey of Australian patients.

BACKGROUND: Improving care coordination is a key priority for health services. The aims of this study were to identify patient- and health service-related predictors of poorly coordinated care and to explore patient preferences to assist care coordination. METHODS: Patients with incident colorectal cancer, identified from a state-wide cancer registry, completed a self-report questionnaire 6 to 8 months after their diagnosis. Care coordination was assessed with the Cancer Care Coordination Questionnaire for Patients. Multiple linear regression models were used to predict factors associated with a poor experience with cancer care coordination. RESULTS: Among 560 patients (56% response rate), care coordination experiences were normally distributed (mean score, 76.1; standard deviation, 10.9). Patients who had 3 or more comorbid conditions (ß, -4.56; standard error [SE], 1.46; P = .006), little or no understanding of the health system (ß, -4.34; SE, 0.94; P < .001), and no regular general practitioner (GP; ß, -4.09; SE, 2.07; P = .049) experienced poorer care coordination. At the health service level, patients who did not receive a written pretreatment plan (ß, -4.15; SE, 0.95; P < .001) or did not see a cancer care coordinator (ß, -3.29; SE, 1.03; P = .001) had lower scores. The most preferred resources included information packs (92%), written care plans (88%), and improved access to their own personal medical records (electronic, 86; paper, 84%), with most patients preferring a shared GP and surgeon care model. CONCLUSIONS: There was wide variation in experiences across the state. The factors associated with lower scores provide a focus for targeted strategies for improving patients' experience with colorectal cancer care coordination. Cancer 2017;123:319-326. © 2016 American Cancer Society.

eHealth System for Collecting and Utilizing Patient Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) Among Cancer Patients: Mixed Methods Approach to Evaluate Feasibility and Acceptability.

BACKGROUND: Despite accumulating evidence indicating that collecting patient-reported outcomes (PROs) and transferring results to the treating health professional in real time has the potential to improve patient well-being and cancer outcomes, this practice is not widespread. OBJECTIVE: The aim of this study was to test the feasibility and acceptability of PROMPT-Care (Patient Reported Outcome Measures for Personalized Treatment and Care), a newly developed electronic health (eHealth) system that facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: We developed an eHealth system in consultation with content-specific expert advisory groups and tested it with patients receiving treatment or follow-up care in two hospitals in New South Wales, Australia, over a 3-month period. Participants were recruited in clinic and completed self-report Web-based assessments either just before their upcoming clinical consultation or every 4 weeks if in follow-up care. A mixed methods approach was used to evaluate feasibility and acceptability of PROMPT-Care; data collected throughout the study informed the accuracy and completeness of data transfer procedures, and extent of missing data was determined from participants' assessments. Patients participated in cognitive interviews while completing their first assessment and completed evaluation surveys and interviews at study-end to assess system acceptability and usefulness of patient self-management resources, and oncology staff were interviewed at study-end to determine the acceptability and perceived usefulness of real-time PRO reporting. RESULTS: A total of 42 patients consented to the study; 7 patients were withdrawn before starting the intervention primarily because of changes in eligibility. Overall, 35 patients (13 on treatment and 22 in follow-up) completed 67 assessments during the study period. Mean completeness of patient-reported data was 93%, with 100% accuracy of data transfer. Ten patients completed cognitive interviews, 28 completed evaluation surveys, and 14 completed evaluation interviews at study-end. PROMPT-Care patient acceptability was high-100% (28/28) reported the time to complete the Web-based assessments (average 15 min) as about right, most willing to answer more questions (79%, 22/28 yes), 96% (27/28) found the Web-based assessment easier or same as completing a paper copy, and they valued the self-management resources . Oncology staff (n=5) also reported high acceptability and potential feasibility of the system. CONCLUSIONS: Patients and oncology staff found the PROMPT-Care system to be highly acceptable, and the results suggest that it would be feasible to implement it into an oncology setting. Suggested modifications to the patient assessment survey, clinician access to the reports, and system requirements will be made as part of the next stage of large-scale testing and future implementation of the system as part of routine care. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).

It's all good on the surface: care coordination experiences of migrant cancer patients in Australia.

PURPOSE: Migrants diagnosed with cancer in Australia have high unmet need and poorer psychosocial outcomes than comparable Australian-born patients. It is possible that migrants also experience worse coordination of their cancer care. The purpose of this study was to describe migrant patients' experience of care coordination to inform the development of items for inclusion in a cancer care coordination questionnaire sensitive to the specific cultural needs of these patients. METHODS: Eighteen Chinese (Mandarin and Cantonese), Arabic and Macedonian patients and carers from two metropolitan cancer centres in Sydney, Australia, were recruited. Two focus groups and 11 telephone interviews were conducted in the participants' own language. A semi-structured interview format was utilised to qualitatively explore participants' experiences of cancer care coordination during treatment. Themes were identified using a thematic analysis. RESULTS: Cancer care was generally perceived to be well coordinated. Four themes were identified that impacted on the quality of care coordination as a direct result of a patient's migrant status: (1) the impact of language on understanding and information access, (2) the role of interpreters and (3) access to services and (4) understanding the roles and responsibilities of the team. CONCLUSIONS: Despite their care generally being well coordinated, migrants require additional assistance such as information in a form appropriate to their language proficiency and understanding of the new health system. Development of a culturally specific measure of cancer care coordination will enable evaluation of future strategies to improve care.

Improving psychosocial outcomes for caregivers of people with poor prognosis gastrointestinal cancers: a randomized controlled trial (Family Connect).

PURPOSE: This study investigated the effectiveness of a structured telephone intervention for caregivers of people diagnosed with poor prognosis gastrointestinal cancer to improve psychosocial outcomes for both caregivers and patients. METHODS: Caregivers of patients starting treatment for upper gastrointestinal or Dukes D colorectal cancer were randomly assigned (1:1) to the Family Connect telephone intervention or usual care. Caregivers in the intervention group received four standardized telephone calls in the 10 weeks following patient hospital discharge. Caregivers' quality of life (QOL), caregiver burden, unmet supportive care needs and distress were assessed at 3 and 6 months. Patients' QOL, unmet supportive care needs, distress and health service utilization were also assessed at these time points. RESULTS: Caregivers (128) were randomized to intervention or usual care groups. At 3 months, caregiver QOL scores and other caregiver-reported outcomes were similar in both groups. Intervention group participants experienced a greater sense of social support (p = .049) and reduced worry about finances (p = .014). Patients whose caregiver was randomized to the intervention also had fewer emergency department presentations and unplanned hospital readmissions at 3 months post-discharge (total 17 vs. 5, p = .01). CONCLUSIONS: This standardized intervention did not demonstrate any significant improvements in caregiver well-being but did result in a decrease in patient emergency department presentations and unplanned hospital readmissions in the immediate post-discharge period. The trend towards improvements in a number of caregiver outcomes and the improvement in health service utilization support further development of telephone-based caregiver-focused supportive care interventions.

Cancer Care Team's Management of Clinical Alerts Generated by Electronically Collected Patient Reported Outcomes: We Could Do Better.

Electronically administered patient-reported outcome measures (ePROMs) are effective digital health tools for informing clinicians about cancer patients' symptoms and facilitating timely patient-centred care. This paper describes the delivery of healthcare activities supported by the PROMPT-Care model, including ePROMs generated clinical alerts, cancer care team (CCT) response to alerts, and patients' perceptions of the CCT response and ePROMs system. This mixed-methods study includes cancer patients from four cancer therapy centres in New South Wales, Australia. Quantitative and qualitative data were collected regarding clinical alert activity, CCT response, and patient perceptions of the CCT responses and ePROMs system. Qualitative data were thematically analysed. Of the 328 participants whose care was informed by the digital health tool, 70.8% (n = 233) generated at least one alert during the trial period, with 877 alerts generated in total. Although 43.7% (n = 383) were actioned by the CCT, at least 80% of participants found follow-up CCT phone calls beneficial, with multiple benefits confirmed in interviews. The cancer care delivery arm of the PROMPT-Care trial involving clinical alerts to the CCT was positively perceived by most participants, resulting in a diverse range of benefits. However, further work is required, informed by implementation science, to improve the percentage of actioned clinical alerts.

Stepping into the real world: a mixed-methods evaluation of the implementation of electronic patient reported outcomes in routine lung cancer care.

BACKGROUND: To realize the broader benefits of electronic patient-reported outcome measures (ePROMs) in routine care, we used the RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework to inform the translation of a clinically effective ePROM system (hereafter referred to as the PRM system) into practice. The study aimed to evaluate the processes and success of implementing the PRM system in the routine care of patients diagnosed with lung cancer. METHOD: A controlled before-and-after mixed-methods study was undertaken. Data sources included a self-report questionnaire and interviews with healthcare providers, electronic health record data for PRMs patients and historical controls, and field notes. Descriptive statistics, logistic regression modelling, negative binomial models, generalized estimating equations and repeated measures ANOVA were used to analyze quantitative data. Qualitative data was thematically analyzed. RESULTS: A total of 48/79 eligible people diagnosed with lung cancer completed 90 assessments during the 5-month implementation period (RE-AIM reach). Every assessment breached the pre-defined threshold and care coordinators reviewed and actioned 95.6% of breaches, resulting in 146 referrals to allied health services, most frequently for social work (25.3%), dietetics (18.5%), physiotherapy (18.5%) and occupational therapy (17.1%). PRMs patients had significantly fewer visits to the cancer assessment unit for problematic symptoms (M = 0.23 vs. M = 0.43; p = 0.035), and were significantly more likely to be offered referrals (71% vs. 29%, p < 0.0001) than historical controls (RE-AIM effect). The levels of 'organizational readiness for implementing change' (ORIC) did not show much differences between baseline and follow-up, though this was already high at baseline; but significantly more staff reported improved confidence when asking patients to complete assessments (64.7% at baseline vs. 88.2% at follow-up, p = 0.0046), and when describing the assessment tool to patients (64.7% at baseline vs. 76.47% at follow-up, p = 0.0018) (RE-AIM adoption). A total of 78 staff received PRM system training, and 95.6% of the PRM system alerts were actioned (RE-AIM implementation); and all lung cancer care coordinators were engaged with the PRM system beyond the end of the study period (RE-AIM maintenance). CONCLUSION: This study demonstrates the potential of the PRM system in enhancing the routine care of lung cancer patients, through leveraging the capabilities of automated web-based care options. Research has shown the clear benefits of using electronically collected patient-reported outcome measures (ePROMs) for cancer patients and health services. However, we need to better understand how to implement ePROMs as part of routine care. This study evaluated the processes and outcomes of implementing an ePROMs system in the routine care of patients diagnosed with lung cancer. Key findings included: (a) a majority of eligible patients completed the scheduled assessments; (b) patient concerns were identified in every assessment, and care coordinators reviewed and actioned almost all of these, including making significantly more referrals to allied health services; (c) patients completing assessments regularly were less likely to present to the cancer assessment unit with problematic symptoms, suggesting that ePROMs identified patient concerns early and this led to a timely response to concerns; (d) staff training and engagement was high, and staff reporting increased confidence when asking patients to complete assessments and when describing the assessment tool to patients at the end of the implementation period. This study shows that implementing ePROMs in routine care is feasible and can lead to improvements in patient care.

Implementing patient-reported outcomes into routine care: an audit of cancer patients from two local health districts in New South Wales to understand their capabilities and preferences.

Objective It has been established that the implementation of patient-reported outcome measures (PROMs) in routine care provides significant benefits to patients, providers and health services. However, there are patient-level barriers that must be identified and addressed for the successful implementation of PROMs. This study aimed to understand the capabilities and preferences of our cancer patient population prior to implementation of electronically collected PROMs (ePROMs). Specifically, we conducted a clinic audit to determine the proportion of patients in clinics with access to out-of-clinic internet; those preferring to complete PROMs on paper or via an electronic device; those capable of completing PROMs in English; and those anticipating requiring assistance to complete PROMs. Methods Patients receiving cancer treatment or follow-up care at two Local Health Districts (LHDs) in New South Wales, Australia, completed a questionnaire (audit form) with items about internet and mobile access, communication preferences and assistance needed to complete PROMs. Participant demographic and treatment information were extracted from their electronic medical records. Results Across both LHDs, 637 of 1668 participants (38%) completed the audit forms. Mean participant age was 65 years (range = 23-98), 53% were female, and 92% were outpatients. Patients in the two LHDs differed in their levels of internet and email access, and ability to complete PROMs independently in English, suggesting that some LHD-specific tailoring of implementation strategies is necessary to optimise ePROMs uptake. Conclusion This study highlights the importance of understanding the specific local contexts and patient populations, including potential technology and language barriers, which can influence patient ability to complete ePROMs.

Cross-Cultural Adaptation And Pilot Testing Of The Cancer Care Coordination Questionnaire For Patients (CCCQ-P) In Chinese And Arabic Languages.

BACKGROUND: The Cancer Care Coordination Questionnaire for Patients (CCCQ-P) has been designed to measure patients' experience of this crucial aspect of their cancer care. Migrants are at particular risk of receiving poorly coordinated cancer care due to challenges in communication as well as unfamiliarity with the health system and roles of health professionals. The aim of this study was to cross-culturally adapt and pilot test the CCCQ-P in Chinese and Arabic languages. METHODS: This study followed an established five-stage process for cross-cultural adaptation of self-report measures. The CCCQ-P was forward and back-translated into Arabic, Simplified Chinese, and Traditional Chinese languages by two independent translators. An expert committee review panel appraised the translations, resulting in a pre-final version in the target languages. Face validity, content validity, and consistency of the translated CCCQ-P were then assessed in a sample of bilingual former cancer patients and health professionals. In addition, structured interviews were conducted to explore the meaning of each question and responses to participants. RESULTS: Thirteen health professionals (7 Chinese, 6 Arabic) and 19 former cancer patients (11 Chinese, 8 Arabic) participated in the face validation. Across both language groups, participants agreed that the cross-culturally adapted and translated versions had clear instructions and response options that were appropriate and understandable. All items were considered important and significant to the tool and so no item was removed. Complex medical words caused some differences in preferred terminology in Arabic and Chinese; however, participants agreed that the meaning of the questions and response options was not lost. CONCLUSION: The Arabic, Simplified Chinese, and Traditional Chinese cross-culturally adapted and piloted versions of the CCCQ-P are useful tools to measure patients' experience of cancer care coordination. Further validation and psychometric testing of the instrument are warranted.

Screening for distress in survivorship.

PURPOSE OF REVIEW: The current review provides an overview of recent research and other initiatives aimed at increasing and/or systematizing screening for distress in cancer survivors. It is timely given an increasing drive internationally to implement distress screening as part of routine cancer care. RECENT FINDINGS: Screening using brief validated tools is recommended and the single-item distress thermometer continues to be the international screening tool of choice. Although debate continues regarding the most appropriate cut-off distress thermometer score to identify clinically distressed patients, review of checked items from the accompanying problem list can pinpoint sources of distress, to inform targeted intervention. An integrated approach should include screening, and if required, assessment/referral and intervention. However, whilst distress screening is associated with some impact on referral, especially its timeliness, delivery of evidence-based treatments to address identified distress may be limited by patients declining help and a lack of support services. SUMMARY: Although screening for distress in routine care holds promise for reducing costs and enhancing health system efficiency, its implementation across cancer services is variable. Further research is required to evaluate screening implementation and sustainability in routine care, as well as the feasibility of distress screening in long-term cancer survivors who are no longer in regular contact with cancer centres.

Exploring levels and correlates of health literacy in Arabic and Vietnamese immigrant patients with cancer and their English-speaking counterparts in Australia: a cross-sectional study protocol.

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.

Development of Health Pathways to Standardize Cancer Care Pathways Informed by Patient-Reported Outcomes and Clinical Practice Guidelines.

PURPOSE: High-quality symptom management and supportive care are essential components of comprehensive cancer care. We aimed to describe the development of an evidence-based automated decisional algorithm for patients with cancer that had specific, actionable, clinical, evidence-based recommendations to improve patient care, communication, and management. METHODS: We reviewed existing literature and clinical practice guidelines to identify priority domains of patient care and potential clinical recommendations. Two multidisciplinary clinical advisory groups used a two-stage consensus decision-making approach to determine domains of care and patient-reported outcome (PRO) measures and subsequently developed automated algorithms with clear clinical recommendations amendable to intervention in clinical settings. RESULTS: Algorithms were developed to inform management of patient symptoms, distress, and unmet needs. Three PRO measures were chosen: Distress Thermometer and problem checklist, Edmonton Symptom Assessment Scale, and the Supportive Care Needs Survey-Screening Tool 9. PRO items were mapped to five domains of patient well-being: physical, emotional, practical, social and family, and maintenance of well-being. A total of 15 actionable clinical recommendations tailored to specific issues of concern were established. CONCLUSION: Using automated algorithms and clinical recommendations provides a platform for streamlining and systematizing the use of PROs to inform risk-stratified guideline-informed care. The series of algorithms, which set out systematized care pathways for the clinical care of patients with cancer, can be used to potentially inform patient-centered care.

Development and Feasibility Testing of PROMPT-Care, an eHealth System for Collection and Use of Patient-Reported Outcome Measures for Personalized Treatment and Care: A Study Protocol.

BACKGROUND: Patient-reported outcome (PRO) measures have been used widely to screen for depression, anxiety, and symptoms in cancer patients. Computer-based applications that collect patients' responses and transfer them to the treating health professional in real time have the potential to improve patient well-being and cancer outcomes. OBJECTIVE: This study will test the feasibility and acceptability of a newly developed eHealth system which facilitates PRO data capture from cancer patients, data linkage and retrieval to support clinical decisions and patient self-management, and data retrieval to support ongoing evaluation and innovative research. METHODS: The eHealth system is being developed in consultation with 3 overarching content-specific expert advisory groups convened for this project: the clinical advisory group, technical advisory group, and evaluation advisory group. The following work has already been completed during this phase of the study: the Patient-Reported Outcome Measures for Personalized Treatment and Care (PROMPT-Care) eHealth system was developed, patient-reported outcomes were selected (distress, symptoms, unmet needs), algorithms to inform intervention thresholds for clinical and self-management were determined, clinician PRO feedback summary and longitudinal reports were designed, and patient self-management resources were collated. PROsaiq, a custom information technology system, will transfer PRO data in real time into the hospital-based oncology information system to support clinical decision making. The PROMPT-Care system feasibility and acceptability will be assessed through patients completing PROMPT-Care assessments, participating in face-to-face cognitive interviews, and completing evaluation surveys and telephone interviews and oncology staff participating in telephone interviews. RESULTS: Over the course of 3 months, the system will be pilot-tested with up to 50 patients receiving treatment or follow-up care and 6 oncology staff at 2 hospitals in New South Wales, Australia. Data will be collected to determine the accuracy and completeness of data transfer procedures, extent of missing data from participants' assessments, acceptability of the eHealth system and usefulness of the self-management resources (via patient evaluation surveys and interviews), and acceptability and perceived usefulness of real-time PRO reporting (via oncology staff interviews) at the completion of the pilot phase. CONCLUSIONS: This research investigates implementation of evidence into real world clinical practice through development of an efficient and user-friendly eHealth system. This study of feasibility and acceptability of the newly developed eHealth system will inform the next stage of larger scale testing and future implementation of the system as part of routine care. CLINICALTRIAL: Australian New Zealand Clinical Trials Registry ACTRN1261500135294; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369299&isReview=true (Archived by WebCite at http://www.webcitation.org/6lzylG5A0).

Which information source is best? Concordance between patient report, clinician report and medical records of patient co-morbidity and adjuvant therapy health information.

RATIONALE, AIM AND OBJECTIVES: Previous studies investigating agreement between data sources for co-morbidity and adjuvant therapy information have suggested agreement varies depending on how the information is collected. The aim of this study was to compare agreement among three data sources: patient report, clinician report and medical record. METHOD: Data were collected as part of a nurse-delivered telephone intervention (the CONNECT programme). Patient report was collected using a self-administered questionnaire. Clinician report was collected from the patient's treating surgeon. Medical record information was extracted by a member of the research team. The proportion of specific agreement [positive (PA) and negative agreement (NA)] and Kappa statistics were calculated. RESULTS: The study sample comprised 756 surgical patients with colorectal cancer. For the majority of co-morbidities the lowest level of agreement was found between the patient and clinician (PA 0.29-0.64, Kappa values ranged from 0.22 to 0.58). The highest agreement and Kappa values for co-morbidities were generally found between the patient report and medical record (PA 0.36-0.80 and NA 0.92-0.99; Kappa 0.34-0.77). There was good agreement between patient and clinician reports for receipt adjuvant therapy {Kappa 0.78 [confidence interval (CI) 0.72-0.84] and 0.84 [CI 0.80-0.88], respectively; PA 0.87 and 0.92, respectively}. No consistent pattern in the predictors of non-agreement was found. CONCLUSION: Given there was higher agreement between patient report and medical record review, the use of patient self-report questionnaires to ascertain co-morbid conditions remains a valid method for health services research.