Web-Based End-of-Life Planning Tool for Cancer
Recruiting in Palo Alto (17 mi)
Age: 18+
Sex: Any
Travel: May Be Covered
Time Reimbursement: Varies
Trial Phase: Academic
Recruiting
Sponsor: Fred Hutchinson Cancer Center
Disqualifiers: Non-English, Cognitive impairment, others
No Placebo Group
Approved in 1 Jurisdiction
Trial Summary
What is the purpose of this trial?
This clinical trial examines a web-based tool, in partnership with Peacefully, Inc, designed to improve end-of-life planning among patients with advanced cancers. This program helps users prepare comprehensively for end-of-life (e.g., medical wishes, legal estate planning, financial planning and transfer of accounts, legacy building, and emotional support). It is expected that this web-based end-of-life planning program may reduce distress and improve end-of-life preparation among advanced cancer patients.
Will I have to stop taking my current medications?
The trial information does not specify whether you need to stop taking your current medications.
What data supports the effectiveness of the treatment Web-Based Tool for End-of-Life Planning, Peacefully, Web-Based End-of-Life Planning Tool?
Research suggests that web-based tools for advance care planning can improve communication among patients, families, and healthcare providers, and help in identifying and addressing patient needs more effectively. These tools have been explored in various conditions, such as ovarian cancer and lung disease, indicating their potential to support end-of-life planning.12345
Is the Web-Based End-of-Life Planning Tool safe for use in humans?
How is the Web-Based End-of-Life Planning Tool for Cancer different from other treatments?
The Web-Based End-of-Life Planning Tool, also known as Peacefully, is unique because it is an online resource designed to help cancer patients and healthcare providers discuss and plan for end-of-life care, focusing on quality of life and advance care planning. Unlike traditional treatments that focus on medical interventions, this tool facilitates communication and decision-making about end-of-life preferences.1781011
Eligibility Criteria
This trial is for adults with advanced cancer, who have a life expectancy of less than 12 months and have undergone at least one round of chemotherapy. Participants must be able to use a computer or mobile device, give informed consent, and speak English fluently. Those severely cognitively impaired or too ill to complete interviews are excluded.Inclusion Criteria
The ability to provide informed consent
My cancer is advanced or has spread, and it got worse after my first chemotherapy.
Clinician estimated prognosis of =< 12 months
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Exclusion Criteria
Too ill or weak to complete the interviews (as judged by the interviewer)
I am not fluent in English.
Severely cognitively impaired (as measured by Short Portable Mental Status Questionnaire scores of < 6)
Trial Timeline
Screening
Participants are screened for eligibility to participate in the trial
2-4 weeks
Intervention
Patients receive Peacefully's web-based tool to help with end-of-life planning on day 7
4 weeks
Baseline and 4 weeks post-randomization
Control
Patients receive standard care
4 weeks
Baseline and 4 weeks post-randomization
Follow-up
Participants are monitored for changes in well-being and end-of-life planning engagement
24 weeks
Follow-up at 4, 12, and 24 weeks post-randomization
Treatment Details
Interventions
- Web-Based Tool for End-of-Life Planning (Behavioural Intervention)
Trial OverviewThe study tests a web-based tool created with Peacefully, Inc., aimed at helping patients with advanced cancers plan for end-of-life. It covers medical wishes, legal estate planning, financial matters, legacy building, and emotional support to potentially ease distress and improve preparation.
Participant Groups
2Treatment groups
Experimental Treatment
Active Control
Group I: Group I (Peacefully's)Experimental Treatment2 Interventions
Patients receive Peacefully's web-based tool to help with end-of-life planning on day 7.
Group II: Group II (standard of care)Active Control2 Interventions
Patients receive standard care.
Web-Based Tool for End-of-Life Planning is already approved in United States for the following indications:
🇺🇸 Approved in United States as Peacefully for:
- End-of-life planning for patients with advanced cancers
Find a Clinic Near You
Research Locations NearbySelect from list below to view details:
Fred Hutch/University of Washington Cancer ConsortiumSeattle, WA
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Who Is Running the Clinical Trial?
Fred Hutchinson Cancer CenterLead Sponsor
Peacefully, Inc.Collaborator
National Institute of Nursing Research (NINR)Collaborator
References
Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. [2021]Few available tools facilitate cancer patients and physicians' discussions of quality of life and end-of-life. Our objective was to develop a web-based tool to promote advance care planning for women with ovarian cancer.
Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease. [2018]There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease.
Building on sand: digital technologies for care coordination and advance care planning. [2022]Approaches using digital technologies to support advance care planning (ACP) and care coordination are being used in palliative and end of life care. While providing opportunities to facilitate increases in the completeness, sharing and availability of care plans, the evidence base underpinning their use remains limited. We outline an approach that continues to be developed in England; Electronic Palliative Care Coordination Systems (EPaCCS). Stages governing their optimal use are outlined alongside unanswered questions with relevance across technology-mediated approaches to ACP. Research has a critical role in determining if technology-mediated approaches to ACP, such as EPaCCS, could be useful tools to support the delivery of care for patients with chronic and progressive illnesses.
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. [2022]Routine electronic patient-reported outcome collection in patients with advanced disease could improve communication among patients, caregivers, and providers, the timeliness of identifying problems, and effectiveness of follow-up.
What is the potential for the use of clinical outcome measures to be computerised? Findings from a qualitative research study. [2019]Clinical outcome measures are used in clinical audit to monitor the quality of care provided to patients. As information technology (IT) is increasingly being integrated into the delivery of health care, computerising the use of clinical outcome measures has been proposed. However, little is known about the attitudes of health professionals towards this. Aims to understand professionals' views on adapting one clinical outcome measure--the palliative care outcome scale (POS)--for use on hand-held computers. Concludes that these results reinforce existing research on clinical outcome measures and IT in health care; identify special palliative care issues when considering the use of computerised clinical outcome measures with patients; and highlight the need for further research.
Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies. [2022]Patient-reported outcomes (PROs) are an emerging paradigm in clinical research and healthcare, aiming to capture the patient's self-assessed health status in order to gauge efficacy of treatment from their perspective. As these patient-generated health data provide insights into the effects of healthcare processes in real-life settings beyond the clinical setting, they can also be viewed as a resolution beyond what can be gleaned directly by the clinician. To this end, patients are identified as a key stakeholder of the healthcare decision making process, instead of passively following their doctor's guidance. As this joint decision-making process requires constant and high-quality communication between the patient and his/her healthcare providers, novel methodologies and tools have been proposed to promote richer and preemptive communication to facilitate earlier recognition of potential complications. To this end, as PROs can be used to quantify the patient impact (especially important for chronic conditions such as cancer), they can play a prominent role in providing patient-centric care. In this paper, we introduce the MyPal platform that aims to support adults suffering from hematologic malignancies, focusing on the technical design and highlighting the respective challenges. MyPal is a Horizon 2020 European project aiming to support palliative care for cancer patients via the electronic PROs (ePROs) paradigm, building upon modern eHealth technologies. To this end, MyPal project evaluate the proposed eHealth intervention via clinical studies and assess its potential impact on the provided palliative care. More specifically, MyPal platform provides specialized applications supporting the regular answering of well-defined and standardized questionnaires, spontaneous symptoms reporting, educational material provision, notifications etc. The presented platform has been validated by end-users and is currently in the phase of pilot testing in a clinical study to evaluate its feasibility and its potential impact on the quality of life of palliative care patients with hematologic malignancies.
Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review. [2022]There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.
Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients. [2022]The purpose of this study was to explore the acceptability, applicability, and understandability of a promising advance care planning (ACP) web-based resource for use with oncology patients, and determine whether revisions to the website would be necessary before implementation into oncology care. The resource is called PREPARE ( www.prepareforyourcare.org ) and it had not been tested for use within oncology, but had previously been shown to influence the readiness of older, community-dwelling adults to engage in ACP behaviors.
Development and preliminary usability testing of an electronic conversation guide incorporating patient values and prognostic information in preparation for older people's decision-making near the end of life. [2023]Initiating end-of-life conversations can be daunting for clinicians and overwhelming for patients and families. This leads to delays in communicating prognosis and preparing for the inevitable in old age, often generating potentially harmful overtreatment and poor-quality deaths. We aimed to develop an electronic resource, called Communicating Health Alternatives Tool (CHAT) that was compatible with hospital medical records software to facilitate preparation for shared decision-making across health settings with older adults deemed to be in the last year of life. The project used mixed methods including: literature review, user-directed specifications, web-based interface development with authentication and authorization; clinician and consumer co-design, iterative consultation for user testing; and ongoing developer integration of user feedback. An internet-based conversation guide to facilitate clinician-led advance care planning was co-developed covering screening for short-term risk of death, patient values and preferences, and treatment choices for chronic kidney disease and dementia. Printed summary of such discussion could be used to begin the process in hospital or community health services. Clinicians, patients, and caregivers agreed with its ease of use and were generally accepting of its contents and format. CHAT is available to health services for implementation in effectiveness trials to determine whether the interaction and documentation leads to formal decision-making, goal-concordant care, and subsequent reduction of unwanted treatments at the end of life.
Online tool targets better skills in end of life care. [2019]A free online resource could help nurses and other healthcare staff to provide palliative and end of life care to people with a terminal illness.
Interactive collaborative consultation model in end-of-life care. [2019]With interactive communication becoming an engaging and accessible venue, the specialized field of end-of-life care could greatly benefit by utilizing the Internet to ensure comprehensive palliative care for many underserved areas worldwide. Interactive communication can enhance the care of patients with advanced disease and their families by providing practitioners with current research-based information to empower their clinical decision-making. A collaborative consultative Internet relationship can support practitioners in providing comprehensive palliative interventions for their patients in a timely manner. This paper describes the development of the interactive collaborative consultation model and its demonstration between a rural palliative care nurse practitioner and an urban medical research physician. Expert consultation for individual patients through the Internet can help improve access to palliative consultation and, ultimately, enhance the care of many dying persons living within underserved or remote areas worldwide.