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Completed

NCT Number: NCT00948207

Online and Narrative Interventions 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.

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Key information

Conditions

Metastatic Cancer Disease Attributes Neoplasm Metastasis Neoplasms Neoplastic Processes Pathologic Processes Pathological Conditions, Signs and Symptoms Recurrence

Age range

30 year–60 year

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

University of Wisconsin Carbone Cancer Center

Madison, Wisconsin, 53792, United States

About this study

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.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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.

Treatment and study plan

My Living Story

Behavioral

Components include:

  • Life Review Interview by phone (questions based on Chochinov, 2002 dignity enhancing interview);
  • Edited transcript is delivered in a word format on...;
  • miLivingStory, a personal social network, where participants can manage content, design and layer; invite and manage their fiends and family.
  • 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.

My Own Resources

Behavioral

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.

Primary outcomes

  1. Existential Well-being (FACIT-Sp)

    Time frame: 0, 2 and 4 months

Secondary outcomes

  1. Distress (POMS-SF)

    Time frame: 0, 2, and 4 months

Sponsors and collaborators

Lead sponsor

University of Wisconsin, Madison

Other

Collaborators

  • National Cancer Institute (NCI)

Registry information

Official study title

Online Narrative Interventions and Family Support for Advanced Cancer Patients

Important dates

Study start
2009
Primary completion
2011
Study completion
2011
First posted
Jul 29, 2009
Registry last updated
Nov 19, 2019

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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