Online and Narrative Interventions for Advanced Cancer Patients
Condition: Metastatic Cancer
MeSH terms: Neoplasm Metastasis
Study type: Interventional

Summary: 
      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.
    

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.
    

Intervention name(s): My Living Story; My Own Resources
Intervention type(s): Behavioral; Behavioral
Intervention description(s): 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.; 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.
Allocation: Randomized
Intervention model: Parallel Assignment
Masking: Single (Outcomes Assessor)
Primary purpose: Supportive Care
Keywords: Metastatic Cancer; Recurrent Cancer; Distributed Hematological Cancer; Advanced Cancer; Terminal Cancer; Stage III Cancer; Stage IV Cancer