Health eCommunities - The Impact of Listservs on Cancer Patients

August 2, 2007 updated by: Robert Wood Johnson Foundation

The purpose of this study is to assess the impact of participation in the Association of Cancer Online Resources (ACOR) mailing lists on chronic disease management for cancer patients, we are focusing on several priority areas. These include factors that influence the use of online interventions over time and the effects of patient-provider interactions on the use of eHealth interventions (as well as vice versa). We also are breaking new ground in a number of important methodological areas related to online survey research.

Our specific aims are:

  1. Conduct a qualitative analysis of a 10% sample of messages (approximately 5,200) obtained over 5 months from 9 ACOR lists to develop a comprehensive set of potential chronic disease management outcomes and a fuller understanding of the issues and themes that characterize list participation. The content analysis will identify important themes and issues in the messages. These themes and issues will help in survey refinement and ground our proposed quantitative survey questionnaire items. Survey analyses will also be enriched by the qualitative data. Finally, the qualitative analysis will stand as an independent body of work.
  2. Conduct a web-based survey of at least 1,680 new ACOR mailing list patient members and approximately 1,680 non-patient subscribers to assess the positive and negative effects of participation in ACOR lists at one month and four months after joining the list and completing a baseline survey.
  3. Disseminate study findings to ACOR leadership, participants and the larger online community.
  4. Develop a plan to convert the findings into training, recommendations, tools and policies to improve list processes. We aim to answer real world, practical questions using methodology that is at once rigorous, practical and ethical. The components are inter-related and complementary.

Study Overview

Status

Completed

Conditions

Intervention / Treatment

Detailed Description

Abstract:

Internet-based health applications can have powerful positive health effects (e.g. IOM, 2002: Eng et al., 2000; Gustafson et al., 2000). Research has focused on Internet users as consumers of information, not how they interact with one another, providing advice, consolation, encouragement and pointers to resources. There has been little evaluation of health-related mailing lists, email-based applications that connect millions of people, many with chronic diseases, with one another. The Association of Cancer Online Resources (ACOR) has teamed with The University of North Carolina (UNC) to assess the impact of participation on patients, survivors and others (including caregivers) in 15 cancer-related mailing lists managed by ACOR (www.acor.org). We are conducting a multi-method evaluation with several elements. In the qualitative component, we are conducting a content analysis of a subset of threaded discussions from archived mailing list pages to identify a comprehensive set of themes and key outcomes. This information will provide a richer understanding of mailing list processes and also will provide checks and balances on the quantitative survey. We also are evaluating the impact of being a subscriber to ACOR mailing lists on a range of outcomes by following a cohort of new subscribers for 4 months from sign-up (minimum n=1680). Baseline, one and four month web-based surveys (with telephone as an option for those who cannot do web surveys) will be administered to consenting subscribers. We also are surveying ongoing subscribers who are patients and caregivers (minimum n=1680). We will disseminate findings to several key audiences, including listowners and members as well as to a broader audience.

Project Aims:

  1. Develop a comprehensive set of potential chronic disease management outcomes and a fuller understanding of the issues and themes that characterize mailing list participation.
  2. Assess the effects of participation in ACOR mailing lists one month and four months after joining mailing lists and completing baseline surveys for new subscribers and through one-time surveys to ongoing subscribers and caregivers.
  3. Disseminate study findings to ACOR leadership, participants and the larger online community.

Qualitative Component:

The main goal of the qualitative component is to systematically identify themes about cancer disease management and cancer mailing list support group experiences and to use that knowledge to develop a more refined understanding of mailing list use. The analyses also include:

  • Participation patterns within and across mailing lists over time;
  • Mailing list group processes, the nature of online group social support, and the role of mailing listowners in providing and helping group members support each other; and
  • Emergent themes not previously noted in cancer-related stress and online group behavior and communication research.

Eligibility Criteria:

Eligibility is based on joining one of 15 ACOR mailing lists over a 1 ½ year accrual period. We defined eligible persons as:

  • New patient/survivor subscribers aged 18 and over, have had cancer, and joined a participating mailing list within the past 10 days; or
  • Ongoing patient/survivor subscribers aged 18 and over, have had cancer, and have been a member of a participating list for more than 10 days; or
  • Caregiver subscribers aged 18 and over and care for a cancer patient or survivor in any capacity (actively or passively).

Study Type

Observational

Enrollment

3360

Contacts and Locations

This section provides the contact details for those conducting the study, and information on where this study is being conducted.

Study Locations

  • United States
    • North Carolina
      • Chapel Hill, North Carolina, United States, 27599
        • The University of North Carolina at Chapel Hill

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Eligibility Criteria

Ages Eligible for Study

18 years and older (Adult, Older Adult)

Accepts Healthy Volunteers

Yes

Genders Eligible for Study

All

Description

Inclusion Criteria:

Eligibility is based on joining one of 15 ACOR mailing lists over a 1 ½ year accrual period. We defined eligible persons as:

  • New patient/survivor subscribers aged 18 and over, have had cancer, and joined a participating mailing list within the past 10 days; or
  • Ongoing patient/survivor subscribers aged 18 and over, have had cancer, and have been a member of a participating list for more than 10 days; or
  • Caregiver subscribers aged 18 and over and care for a cancer patient or survivor in any capacity (actively or passively).

Study Plan

This section provides details of the study plan, including how the study is designed and what the study is measuring.

How is the study designed?

Design Details

Collaborators and Investigators

This is where you will find people and organizations involved with this study.

Sponsor

Robert Wood Johnson Foundation

Collaborators

Association of Cancer Online Resources

Investigators

  • Principal Investigator: Barbara K Rimer, DrPH, University of North Carolina, Chapel Hill

Publications and helpful links

The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.

General Publications

Study record dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Major Dates

Study Start

September 1, 2003

Study Completion

August 1, 2006

Study Registration Dates

First Submitted

July 6, 2005

First Submitted That Met QC Criteria

July 6, 2005

First Posted (Estimate)

July 14, 2005

Study Record Updates

Last Update Posted (Estimate)

August 3, 2007

Last Update Submitted That Met QC Criteria

August 2, 2007

Last Verified

August 1, 2007

More Information

Terms related to this study

Keywords

Other Study ID Numbers

  • 49152

This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.

Clinical Trials on Cancer

Clinical Trials on Participation on the ACOR Listserv

Search Similar Trials

Sponsors and Collaborators

Medical Conditions

Drug Interventions

CROs by country

CROs in Belgium

Conditions

Rare Diseases

Drug Interventions

Dietary Supplements

Sponsor/Collaborators

Locations

3
Subscribe