Clinical trial · Observational
Health eCommunities - The Impact of Listservs on Cancer Patients
- Source
- ClinicalTrials.gov
- Retrieved
- Sep 8, 2026
- Layer
- normalized (units and labels harmonized; values unchanged)
- Run
- ING-CLINICALTRIALS-20260908-000001
Summary
Brief summary (as posted)
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.
Conditions
Conditions (1)
Free-text conditions as registered, with the CancerIndex entity they were reconciled to and the match type.
| Condition (as posted) | Mapped entity | Match | Confidence |
|---|---|---|---|
| Cancer | Malignant Neoplasm | ALIAS | 0.90 |
Interventions
Interventions (1)
| Intervention | Type | Mapped drug | Match |
|---|---|---|---|
| Participation on the ACOR Listserv | Behavioral | — | UNRESOLVED |
Eligibility
Eligibility (as posted)
- Sex
- All
- Minimum age
- 18 Years
Show eligibility criteria text
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).
References
Publications (3)
- RESULTRimer BK, Lyons EJ, Ribisl KM, Bowling JM, Golin CE, Forlenza MJ, Meier A. How new subscribers use cancer-related online mailing lists. J Med Internet Res. 2005 Jul 1;7(3):e32. doi: 10.2196/jmir.7.3.e32. PMID 15998623
- RESULTMichael Bowling J, Rimer BK, Lyons EJ, Golin CE, Frydman G, Ribisl KM. Methodologic challenges of e-health research. Eval Program Plann. 2006 Nov;29(4):390-6. doi: 10.1016/j.evalprogplan.2006.08.011. Epub 2006 Oct 20. PMID 17950867
- RESULTMeier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res. 2007 May 14;9(2):e12. doi: 10.2196/jmir.9.2.e12. PMID 17513283