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Online Narrative Interventions and Family Support for Advanced Cancer Patients

30 Years
60 Years
Open (Enrolling)
Metastatic Cancer

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Trial Information

Online Narrative Interventions and Family Support for Advanced Cancer Patients

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

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.

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.

Type of Study:


Study Design:

Allocation: Randomized, Intervention Model: Parallel Assignment, Masking: Single Blind (Outcomes Assessor), Primary Purpose: Supportive Care

Outcome Measure:

Existential Well-being (FACIT-Sp)

Outcome Time Frame:

0, 2 and 4 months

Safety Issue:


Principal Investigator

Margaret (Meg) E Wise, PhD

Investigator Role:

Principal Investigator

Investigator Affiliation:

University of Wisconsin, Madison


United States: Institutional Review Board

Study ID:

R21 CA129890-01A2



Start Date:

February 2009

Completion Date:

April 2012

Related Keywords:

  • Metastatic Cancer
  • Metastatic Cancer
  • Recurrent Cancer
  • Distributed Hematological Cancer
  • Advanced Cancer
  • Terminal Cancer
  • Stage III Cancer
  • Stage IV Cancer
  • Neoplasm Metastasis
  • Neoplasms
  • Neoplasms, Second Primary



University of Wisconsin Carbone Cancer Center Madison, Wisconsin  53792-5669