Tell Us™: A Web-Based Tool for Improving Communication Among Patients, Families, and Providers in Hospice and Palliative Care Through Systematic Data Specification, Collection, and Use

Abstract

Context Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers and providers and improve the timeliness of identifying problems and effectiveness of follow-up. Objective To develop a web-based tool to collect symptoms and need data and provide feedback to hospice and palliative care patients, caregivers and providers. Methods We developed Tell Us™ based on an existing pure web technology platform, the Medical Decision Logic, Inc. (“mdlogix”) Health Science Process Framework (HSPF™). The software development process included eliciting information on systems and needs and mapping care processes with three diverse hospices, and soliciting ideas for the software from clinicians and researchers. We developed a prototype software product, incorporated the hospices’ processes, assessment questions, and educational materials, and refined the product with feedback from other hospice and palliative care professionals. Results Tell Us includes modules for authoring and deploying clinical queries and completion schedules; for enrolling clinical sites and patients for patients and/or families to complete assigned assessments on a scheduled basis; and for providers to view patient-reported data. Tell Us provides customizable automated provider e-mail alerts based on patient responses (such as uncontrolled symptoms or need for medication refills) and provides educational materials targeted to patient needs. Conclusions This web-based toolset may be useful for improving communication between hospice and palliative care patients, caregivers, and providers and proactive patient management. Future research will involve integrating the software into care and evaluating its feasibility and use for data collection, patient education, and improving outcomes.

Support for Caregivers of Cancer Patients: Transition After Active Treatment

“…Webbased toolkits may become useful to improve communication among patients, caregivers, and professionals. These can be used to foster understanding, provide education, and facilitate care management through communication (46,47).…”

Burdens, Needs and Satisfaction of Terminal Cancer Patients and their Caregivers

“…Terminal cancer patients suffer from multidimentional experience related to physical symptoms, psychological distress, existential concerns, and social-relational worries (Snowdon et al, 2010;Ugur and Fadiloglu, 2010). They require assistance, including home nursing care, help with transportation, homemaking services, and personal care; that the families of terminal cancer patients take on substantial burdens in caring for them (Yang et al, 2004;Dy et al, 2011;Kimman et al, 2012). In one study, 5% of caregivers had quit their job or declined advancement, and a large proportion lost work hours or used special leave or holidays to fulfill their caregiving responsibilities (Xian et al, 2011).…”

Information and communication technology for managing pain in palliative care: a review of the literature

“…Of the 24 included studies, 7 unique study designs were described: randomised experiment,16–19 non-randomised experiment,5 observational,20 survey design,21 22 system description,23 24 expert opinion25 and a non-specified non-experimental study design 26–38. The largest proportion of included papers used a non-specified non-experimental study design,34–46 including reports of patients completing usability evaluations or providing feedback on specific system features using a range of methods including qualitative interviews and descriptive evaluation.…”