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

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

Abstract 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

Additional file 1: of Patterns of follow up and survivorship care for people with colorectal cancer in new South Wales, Australia: a population-based survey

NSW Bowel Cancer Care Follow-up Survey. (PDF 524 kb

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

Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.10.2020. 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

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\u27 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\u27 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

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

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

Abstract 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