Clinical trial NCT00948207: Online and Narrative Interventions for Advanced Cancer Patients
Official title: Online Narrative Interventions and Family Support for Advanced Cancer Patients
Study type: INTERVENTIONAL
Overall status: COMPLETED
Phase: NA
Conditions: Metastatic Cancer
Keywords: Metastatic Cancer
Recurrent Cancer
Distributed Hematological Cancer
Advanced Cancer
Terminal Cancer
Stage III Cancer
Stage IV Cancer
Lead sponsor: University of Wisconsin, Madison
Sponsor class: OTHER
Collaborators: name: National Cancer Institute (NCI)
First posted: 2009-07-29
Enrollment: 117
Sex: ALL
Minimum age (years): 30
Maximum age (years): 60
Standard ages: ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: PARALLEL
Primary purpose: SUPPORTIVE_CARE

Brief 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.

Eligibility criteria: 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.

Primary outcomes:
measure: Existential Well-being (FACIT-Sp)
timeFrame: 0, 2 and 4 months
Secondary outcomes:
measure: Distress (POMS-SF)
timeFrame: 0, 2, and 4 months
Other outcomes:
Locations:
city: Madison
country: United States
facility: University of Wisconsin Carbone Cancer Center
state: Wisconsin
Study officials:
affiliation: University of Wisconsin, Madison
name: Margaret (Meg) E Wise, PhD
role: PRINCIPAL_INVESTIGATOR
References: