Web-Based End-of-Life Planning Tool for Cancer

Overseen By Megan J Shen, PhD.

Age: 18+

Sex: Any

Trial Phase: Academic

Sponsor: Fred Hutchinson Cancer Center

Disqualifiers: Non-English, Cognitive impairment, others

No Placebo Group All trial participants will receive the active study treatment (no placebo)

Approved in 1 Jurisdiction This treatment is already approved in other countries

Compensation: Varies

Number of Visits: 12

100 Participants Needed

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. ^{1 2 3 4 5}

Is the Web-Based End-of-Life Planning Tool safe for use in humans?

The available research does not provide specific safety data for the Web-Based End-of-Life Planning Tool, but similar tools have been generally accepted and found easy to use by patients and caregivers in various studies. ^{1 6 7 8 9}

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. ^{1 7 8 10 11}

Research Team

Megan J Shen, PhD.

Principal Investigator

Fred Hutch/University of Washington Cancer Consortium

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

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)

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

Trial Overview The 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

Group I: Group I (Peacefully's) Experimental Treatment 2 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 Control 2 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

Who Is Running the Clinical Trial?

Fred Hutchinson Cancer Center

Lead Sponsor

Trials

583

Recruited

1,341,000+

Peacefully, Inc.

Collaborator

Trials

1

Recruited

100+

National Institute of Nursing Research (NINR)

Collaborator

Trials

623

Recruited

10,400,000+

Findings from Research

A web-based tool was developed to assist women with ovarian cancer in advance care planning, focusing on advance healthcare directives and palliative care, and was tested in a pilot study with 53 participants.

While the tool did not significantly increase the completion rates of advance healthcare directives or palliative care consultations, it did help reduce decisional conflict and improve user satisfaction with the information provided.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. Vogel, RI., Petzel, SV., Cragg, J., et al.[2021]

A Web-based advance care planning tool for lung disease received high acceptability and potential usefulness ratings from 50 stakeholders, including patients, surrogates, and clinicians, indicating strong support for its development.

Stakeholders suggested that the tool should include videos, interactive content, and allow users to control their progress, while also addressing challenges like emotional difficulties and varying levels of computer literacy.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease. Chiarchiaro, J., Ernecoff, NC., Buddadhumaruk, P., et al.[2018]

Digital technologies, like Electronic Palliative Care Coordination Systems (EPaCCS), are being explored to enhance advance care planning and coordination in palliative care, but the evidence supporting their effectiveness is still limited.

Research is essential to evaluate whether technology-mediated approaches, such as EPaCCS, can effectively improve care delivery for patients with chronic and progressive illnesses.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Building on sand: digital technologies for care coordination and advance care planning. Allsop, MJ., Chumbley, K., Birtwistle, J., et al.[2022]

The Tell Us™ Web-based tool was developed to enhance communication and symptom management among hospice and palliative care patients, caregivers, and providers, based on feedback from clinicians and researchers.

This tool allows for the collection of patient-reported outcomes, automated alerts for providers regarding patient needs, and educational resources, aiming to improve proactive patient management and overall care effectiveness.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

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. Dy, SM., Roy, J., Ott, GE., et al.[2022]

Health professionals have varying attitudes towards adapting the palliative care outcome scale (POS) for use on hand-held computers, indicating a need for further exploration of their views.

The study highlights specific challenges in integrating computerized clinical outcome measures in palliative care, emphasizing the importance of understanding these issues to improve patient care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

What is the potential for the use of clinical outcome measures to be computerised? Findings from a qualitative research study. Hughes, RA., Sinha, A., Aspinal, F., et al.[2019]

The MyPal platform is designed to enhance palliative care for adults with hematologic malignancies by utilizing electronic patient-reported outcomes (ePROs) to capture patients' self-assessed health status, which can improve treatment efficacy from the patient's perspective.

Currently in pilot testing, MyPal aims to facilitate better communication between patients and healthcare providers through regular questionnaires and symptom reporting, potentially improving the quality of life for patients receiving palliative care.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies. Koumakis, L., Schera, F., Parker, H., et al.[2022]

The systematic review identified 30 interactive web-based advance care planning (ACP) tools, with varying formats and quality, highlighting that 80% of these tools had clear aims related to reflection, decision-making, and documentation support.

Quality scores for the tools ranged from 11 to 28, indicating that many tools lacked proper information sources, suggesting a need for better development processes involving users and scientific evidence to enhance content quality.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review. Dupont, C., Smets, T., Monnet, F., et al.[2022]

The PREPARE web-based resource for advance care planning was found to be acceptable, applicable, and understandable for oncology patients, based on feedback from 21 participants receiving cancer treatment.

Some participants expressed difficulty with the language related to life-limiting conditions, suggesting a need for revisions to ensure it does not cause distress or disengagement from advance care planning.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients. Cresswell, MA., Robinson, CA., Fyles, G., et al.[2022]

The Communicating Health Alternatives Tool (CHAT) was developed to help clinicians initiate end-of-life conversations with older adults, aiming to improve shared decision-making and reduce overtreatment in the last year of life.

User testing showed that clinicians, patients, and caregivers found CHAT easy to use and acceptable, suggesting it could effectively facilitate advance care planning and lead to better alignment of treatment with patient preferences.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

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. Cardona, M., Lewis, ET., Bannach-Brown, A., et al.[2023]

A free online resource has been developed to assist nurses and healthcare staff in delivering palliative and end-of-life care for patients with terminal illnesses.

This resource aims to improve the quality of care provided to patients during their final stages of life, ensuring that healthcare professionals have access to essential information and support.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Online tool targets better skills in end of life care. Jones-Berry, S.[2019]

The use of interactive communication via the Internet can significantly improve access to palliative care for patients in underserved areas, enhancing the quality of care for those with advanced diseases.

A collaborative consultation model demonstrated between a rural palliative care nurse practitioner and an urban physician shows that online expert consultations can empower healthcare providers with up-to-date information, leading to better clinical decision-making and timely interventions.

NCBI (Pubmed)

pubmed.ncbi.nlm.nih.gov

Interactive collaborative consultation model in end-of-life care. Kuebler, KK., Bruera, E.[2019]

References

1. United States pubmed.ncbi.nlm.nih.gov

Development and pilot of an advance care planning website for women with ovarian cancer: a randomized controlled trial. [2021]

2. United States pubmed.ncbi.nlm.nih.gov

Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease. [2018]

3. England pubmed.ncbi.nlm.nih.gov

Building on sand: digital technologies for care coordination and advance care planning. [2022]

4. United States pubmed.ncbi.nlm.nih.gov

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]

5. England pubmed.ncbi.nlm.nih.gov

What is the potential for the use of clinical outcome measures to be computerised? Findings from a qualitative research study. [2019]

6. Switzerland pubmed.ncbi.nlm.nih.gov

Fostering Palliative Care Through Digital Intervention: A Platform for Adult Patients With Hematologic Malignancies. [2022]

7. Canada pubmed.ncbi.nlm.nih.gov

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review. [2022]

8. Germany pubmed.ncbi.nlm.nih.gov

Evaluation of an advance care planning web-based resource: applicability for cancer treatment patients. [2022]

9. Netherlands pubmed.ncbi.nlm.nih.gov

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]

10. England pubmed.ncbi.nlm.nih.gov

Online tool targets better skills in end of life care. [2019]

11. United States pubmed.ncbi.nlm.nih.gov

Interactive collaborative consultation model in end-of-life care. [2019]