Advanced Planning for Online Accounts and Data

NCT05222308 | Withdrawn

• 1 other identifier: 21-3375.cc
• Study Type: interventional
• Target: N/A
• Locations: 0 countries
• Sites: N/A

Brief Summary

The proposed research consists of engagements with terminal cancer patients and their friends and family as they engage in end-of-life planning.

Conditions

Terminal Cancer; Metastatic Cancer

Outcome Measures

Primary Outcomes (1)

• Determine best practices for supporting participants

  The investigator will use interviews to develop a broad understanding of the terminal patient, the network, and the relevant accounts and data. During interviews with the terminally ill participant, the study team will seek to develop an understanding of the participant as a person, the network and its key members, and establish a shared set of expectations. The investigator anticipates members of the patient's social network will be involved during this interview. Through personal interviews, the study team will identify end-of-life needs and wishes. The study team will engage in value elicitation activities to identify both what the values are that should inform the work with the participant, as well as the source of values and the agency people have in relationship to them. In many cases, participants will have already engaged in versions of these conversations focused on other domains in their life (e.g., finances, funerary wishes, etc.).

  5 years

Study Arms (1)

Post-Mortem Plan

OTHER

Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

Other: Post-Mortem Plan

Interventions

Post-Mortem Plan OTHER

Following the death of the terminally ill participant, investigators will work with networks as the wishes of the deceased are executed. Continued engagement at this point will allow us to provide support to the network during a difficult period or time while also identifying shortcomings in our plans and systemic challenges to postmortem planning. Working with those who are grieving is a delicate proposition, but one with which my students and I have extensive experience.

Post-Mortem Plan

Eligibility Criteria

• Age: 18 Years - 100 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Life-limited adults diagnosed with metastatic cancer who have online accounts and data.
• Adult family/loved ones of the diagnosed adult who are willing to participate in planning activities.

Sponsors & Collaborators

• University of Colorado, Denver: lead
• U.S. National Science Foundation: collaborator

MeSH Terms

Conditions

Neoplasm Metastasis

Condition Hierarchy (Ancestors)

Neoplastic Processes; Neoplasms; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Officials

• Jed Brubaker

  University of Colorado, Boulder

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: This study aims to identify the challenges that online accounts and data present at the end of life. This study will engage life-limited cancer patients through longitudinal qualitative and technology design methods (action research, contextual inquiry, and participatory design) to: 1. empirically identify challenges that death presents for users; and 2. develop and validate strategies for end-of-life planning related to online accounts and data that honor human dignity while addressing the challenges and constraints of technology design. Investigors will engage patients and their family/loved ones in a consulting and supportive role to: 1. identify their needs and challenges, 2. develop and implement an end-of-life plan, and 3. support family/loved ones with the execution of this plan after the patient dies.

Study Record Dates

• First Submitted: December 27, 2021
• First Posted: February 3, 2022
• Study Start: September 17, 2021
• Primary Completion: September 27, 2024
• Study Completion: September 27, 2024
• Last Updated: July 8, 2025

Record last verified: 2025-07

Data Sharing

• IPD Sharing: Will not share