Online and Narrative Interventions for Advanced Cancer Patients

University of Wisconsin (UW)

Status: Completed

Conditions: Metastatic Cancer

Treatments: Behavioral: My Own Resources; Behavioral: My Living Story

Study type: Interventional

Funder types: Other; NIH

Identifiers

NCT00948207

PHARM/SRC (Other Identifier)

A568000 (Other Identifier)

M-2009-1189 (Other Identifier)

CC09310 (Other Identifier)

R21CA129890-01A2 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

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.

Full 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.

Enrollment: 117 patients

Sex: All

Ages: 30 to 60 years old

Volunteers: No Healthy Volunteers

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.

Trial design

Primary purpose: Supportive Care

Allocation: Randomized

Interventional model: Parallel Assignment

Masking: Single Blind

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117 participants in 2 patient groups

My Living Story

Experimental group

Description:

"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.

Treatment:

Behavioral: My Living Story

My Own Resources

Active Comparator group

Description:

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.

Treatment:

Behavioral: My Own Resources

Behavioral: My Living Story