Online and Narrative Interventions for Advanced Cancer Patients

November 15, 2019 updated by: University of Wisconsin, Madison

Online Narrative Interventions and Family Support for Advanced Cancer Patients

The investigators will test whether narrative life review and web-based social networking for middle aged adults with advanced cancer will improve:

  1. existential well being (and reduce psychological distress)
  2. generativity and relationship quality, thereby mediating the intervention effects

The investigators will also conduct exploratory process analyses of each participant's social network.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Detailed Description

Middle aged patients with advanced cancer report more distress, and active search for meaning and personal growth than older and/or early stage patients. Nonetheless, such positive growth is far from typical and interventions help. Expert-guided life review reduced distress for hospice patients, but is not widely accessible-and many patients lack the energy or skill to write their own life story. Online cancer information and support expert systems improve quality of life. Patients are increasingly developing their own social networks, but many lack the skills to do so. Moreover the effects on social networking on patient well-being have not been studied.

"My Living Story" elicits a dignity-enhancing life story via a telephone interview (based on Chochinov, JAMA 2002), and delivers the edited transcript on the patient's personal miLivingStory social network. miLivingStory links to a life review education website (called miStory) with links to high quality cancer information, support and interactive planning tools.

We hypothesize that telling, revising and sharing the life story with one's selected social network will improve the patient's existential well-being and reduce their distress. Furthermore, we hypothesize that these effects will be mediated by My Living Story's effects on improving the patient's sense of legacy (generativity) and the quality of their relationships. Our exploratory observational analyses of each individual miLivingStory network will contribute to an understanding of how social network configuration and communication patterns correlate with measured outcomes

We will recruit and randomize 100 patients with advanced cancer. The control group will receive a personalized web portal (called miOwnResources) with links to high quality cancer information, social support and interactive planning tools, and a feature to add their own links. All participants will sign informed consent forms, complete a pre-test survey and post-tests at tow and four months.

Study Type

Interventional

Enrollment (Actual)

117

Phase

  • Not Applicable

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • Wisconsin
      • Madison, Wisconsin, United States, 53792
        • University of Wisconsin Carbone Cancer Center

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

30 years to 60 years (Adult)

Accepts Healthy Volunteers

No

Genders Eligible for Study

All

Description

Inclusion Criteria:

  • Age 30 - 60,
  • Stage III or IV Cancer,
  • Able and willing to use an internet computer to complete study activities.

Exclusion Criteria:

  • Institutionalized, < 6 months prognosis,
  • Cannot read or understand English,
  • Unable or unwilling to use an internet computer to complete study activities.

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

  • Primary Purpose: Supportive Care
  • Allocation: Randomized
  • Interventional Model: Parallel Assignment
  • Masking: Single

Arms and Interventions

Participant Group / Arm
Intervention / Treatment
Experimental: My Living Story

"My Living Story" elicits a dignity-enhancing life story via a telephone interview, and delivers the edited transcript on the patient's personal miLivingStory social network. miLivingStory also provides a direct link to miStory, a life review education website with links to high quality websites that provide cancer information, databases to "do your own research", social support, interactive planning tools, and a page to add their own weblinks.

miLivingStory and miStory are both password protected.
Behavioral: My Living Story

Components include:

1. Life Review Interview by phone (questions based on Chochinov, 2002 dignity enhancing interview);

2) Edited transcript is delivered in a word format on...;

3) miLivingStory, a personal social network, where participants can manage content, design and layer; invite and manage their fiends and family.

4) miStory, a life review education website and portal to websites for: cancer information, databases to "do your own research," social support, interactive planning tools, and a page to add their own weblinks.
Active Comparator: My Own Resources
My Own Resources offers usual care access to high quality websites that provide cancer information, databases to "do your own research," social support, and interactive planning tools. Participants will receive access to the website miOwnResources.
Behavioral: My Living Story

Components include:

1. Life Review Interview by phone (questions based on Chochinov, 2002 dignity enhancing interview);

2) Edited transcript is delivered in a word format on...;

3) miLivingStory, a personal social network, where participants can manage content, design and layer; invite and manage their fiends and family.

4) miStory, a life review education website and portal to websites for: cancer information, databases to "do your own research," social support, interactive planning tools, and a page to add their own weblinks.

Behavioral: My Own Resources
miOwnResources is a personalized, password-protected web portal to high quality websites that provide cancer information, cancer research databases for "do your own research," social support, and interactive planning tools. miOwnResources also has a page for participants to add their own weblinks.

What is the study measuring?

Primary Outcome Measures

Outcome Measure
Time Frame
Existential Well-being (FACIT-Sp)
Time Frame: 0, 2 and 4 months
0, 2 and 4 months

Secondary Outcome Measures

Outcome Measure
Time Frame
Distress (POMS-SF)
Time Frame: 0, 2, and 4 months
0, 2, and 4 months

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

University of Wisconsin, Madison

Collaborators

National Cancer Institute (NCI)

Investigators

  • Principal Investigator: Margaret (Meg) E Wise, PhD, University of Wisconsin, Madison

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

Helpful Links

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

February 1, 2009

Primary Completion (Actual)

February 1, 2011

Study Completion (Actual)

July 1, 2011

Study Registration Dates

First Submitted

July 27, 2009

First Submitted That Met QC Criteria

July 28, 2009

First Posted (Estimate)

July 29, 2009

Study Record Updates

Last Update Posted (Actual)

November 19, 2019

Last Update Submitted That Met QC Criteria

November 15, 2019

Last Verified

February 1, 2016

More Information

Terms related to this study

Keywords

Additional Relevant MeSH Terms

Other Study ID Numbers

  • M-2009-1189 (Other Identifier: Institutional Review Board)
  • R21CA129890-01A2 (U.S. NIH Grant/Contract)
  • CC09310 (Other Identifier: University of Wisconsin Carbone Cancer Center)
  • A568000 (Other Identifier: UW Madison)
  • PHARM/SRC (Other Identifier: UW Madison)

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

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