# Presentation: 907893

## Using My HealtheVet (MHV) for Self-Care and to Prevent Complications in Spinal Cord Injuries and Disorders (SCI/D)

- Frances M. Weaver, Timothy P. Hogan, Bridget M. Smith
- QUERI for SCI
- &
- Center for Management of Complex Chronic Care
- Edward Hines, Jr. VA Hospital
- Hines, IL 60141-3030
- 2008 QUERI National Meeting
- Phoenix, Arizona
- December 12th, 2008

## Purpose of presentation

- To describe the motivations, objectives, and methods behind a MHV research project at the Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI)
- To enumerate the successes and barriers we encountered in the course of implementing this study
- To offer some lessons learned for others who may be interested in MHV research

## Team effort

- SCI QUERI researchers
- SCI/D services
- Chief and Deputy Chief Consultant
- Instruction Systems Specialist
- MHV program office
- Paralyzed Veterans of America (PVA)

## SCI/D and the importance of self-management

- Between 225,000 and 300,000 people live with SCI/D in the United States; over 25,000 receive care through VA
- Over 50% of veterans with SCI/D have had their condition for at least 20 years; roughly 80% are at least 50 years of age
- The nature of SCI/D necessitates patient participation in care. Self-management activities include but are not limited to
- Managing one’s bowel care
- Maintaining respiratory health
- Monitoring for and preventing pressure ulcers
- Managing mental health
- Maintaining equipment
- (SCI QUERI, 2008)

**Notes:**
People with SCI/D are living longer lives.

## Information use among people with SCI/D

- Individuals with SCI/D want information about their condition and use a range of interpersonal and mass media information sources (Burkell et al, 2006; Edwards et al., 2002; Vaidyanathan et al., 2001)
- The Internet is a fairly accessible resource in the SCI/D community (Hauber et al., 2002)
- Findings suggest a health-related quality of life benefit for individuals with SCI/D who use the Internet (Drainoni et al., 2004)
- Websites designed to provide information about SCI/D self-management issues are accessed by diverse users (Brillhart, 2007)

## MHV condition and healthy living centers

- Part of the “Research Health” feature of MHV where veterans can gather health information and learn about different health-related topics
- Different centers include different content
- General & advanced info
- Self-management & caregiver info
- Related links
- Online training resources
- Fact sheets
- Intended audience includes veterans, informal caregivers, interested others

**Notes:**
How is MHV facilitating the distribution and use of potentially valuable information that could facilitate effective self-management behaviors? Through many of its features, but one that we found most intriguing is the inclusion of condition or disease specific condition centers. 

## Study purpose & objectives

- The purpose of our project is to understand and facilitate use of MHV as a tool for self-management among veterans with SCI/D
- Specific Objectives:
- Increase MHV enrollment among veterans with SCI/D
- Evaluate the use of an SCI/D condition-specific center and MHV by veterans with SCI/D
- Understand how MHV and the condition center can facilitate self-management among SCI/D veterans

**Notes:**
Transition to this slide:
Based on this literature and the rapidly evolving capabilities of the MHV system, we thought it would be valuable to explore the potential of MHV as a vehicle for distributing important SCI/D self-management information and as a tool to support self-management among our SCI/D veterans more generally.

## Study methods

- Stage One – raising awareness, promoting enrollment and in-person authentication among SCI/D veterans at two VA facilities (Hines and St. Louis)
- Stage Two – mail-based survey of veterans to determine MHV enrollment status, understand health information seeking, and assess use of the SCI/D condition center and MHV
- Stage Three – semi-structured interviews with a smaller sample veterans recruited from those who completed a survey to understand the role of MHV and the condition center in self management
- In December 2007, proposal submitted to secure funding for these activities via the QUERI rapid response project (RRP) mechanism

**Notes:**
STAGE ONE NOTES:
We will send information about MHV to all veterans with SCI/D seen at the Hines and St. Louis SCI Centers, share information about the system with providers at these locations, and collaborate with MHV coordinators at the two sites to generate interest in the tool and to facilitate the IPA process. We expect that the outcome of these activities will be increased enrollment of veterans with SCI/D in the MHV system. The MHV points of contact at Hines and St. Louis have already expressed support of this effort.

STAGE TWO NOTES:
Utilizing the Hines and St. Louis SCD registries, we will generate lists of veterans who were seen for SCI/D-related care at least once in the current fiscal year, all of whom will receive our survey in the mail. Current registry data indicates that number is approximately 800 veterans (451 from Hines, 346 from St. Louis). To facilitate participation, a small token incentive will be mailed with each survey. Veterans will also be offered the opportunity to enroll in a drawing for a $25.00 gift certificate to their local VA canteen. Two separate reply envelopes will be included in each mailing, one for the survey and the other for drawing entry cards. For the purposes of our follow-up work, participants will be assigned a study identification number. No names will be printed on the surveys or reply envelopes, only the assigned study identification numbers. Because this is a one time questionnaire and our two envelope approach will produce de-identified survey data, we will request a waiver for written informed consent at this stage. If a survey is not returned within three weeks, a second survey will be sent along with a note and toll-free telephone number that individuals can call should they prefer to participate by phone. Data analysis will consist of descriptive statistics including t-test, chi-square and logistic regression.

STAGE THREE NOTES:
Survey respondents will also have the opportunity to indicate whether or not they would be willing to do a follow-up interview. Drawing on the survey responses, we will use purposive sampling procedures [19] to assemble a smaller group of veterans (n=30, 15 per site) who have had different experiences with MHV and the condition center. We will conduct one-on-one, audio-recorded interviews with these individuals to generate more detailed data on how health information, MHV, and the condition center are part of their self-care activities. To the extent possible, interviews will be conducted in person, although veterans who wish to speak by telephone will be given that opportunity. Veterans will be compensated for their participation in this stage of the project with a $10.00 gift certificate to their local VA canteen. In all cases, written informed consent will be secured from participants at this stage. Audio-recordings of the interviews will be transcribed into text and analysis will proceed through coding and the constant comparative method.

## Developing an SCI/D condition center

- Initial content of the condition center
- Consumer guides developed by the Consortium for Spinal Cord Medicine (CSCM) and produced by the PVA for self-management topics, including bowel management, pressure ulcers, and depression
- Respiratory vaccine video developed by SCI QUERI
- Checklists, information sheets for disaster preparedness
- Contents would continue to be expanded over time
- With effort from MHV program office, condition center “straw man” was created
- Assumed that the condition center would be operational before the various stages of the project began

**Notes:**
The SCI condition center will be operational before this project begins. Separate CGs for bowel management, pressure ulcers, and depression, along with a respiratory vaccine video developed by SCI QUERI will form the initial contents of the condition center. The Paralyzed Veterans of America, who produce the CGs, have graciously agreed to their inclusion in MHV. 

## Roadblocks

- Content development issues
- Posting consumer guides on MHV
- Copyright protection; ownership issues
- Contractual requirements
- Linking to the consumer guides through MHV
- Federal/VA policy on linking to sites that solicit funds
- Study design and data collection issues
- Office of Management and Budget (OMB) requirements and approval process
- Conflicts between OMB approval time frames for surveys and interviews and the “rapid” aspect of RRPs

## Facilitating resources and current status

- Supportive colleagues and dialogue
- Ongoing conversations with the MHV program office and PVA to resolve content development issues
- Current solution involves the creation of a separate website by PVA to host the consumer guides
- MHV will link directly to this separate site
- Condition center expected to go live in early 2009
- Study design and data collection issues
- CPRS flag will allow us to identify MHV users
- Working alone versus collaboratively
- Cross-cutting efforts and economies of scale

## Some lessons learned

- Providing convenient access to evidence-based health and self-management information in a web-based environment could be of significant benefit to all our veterans
- MHV is new and evolving
- Barriers are being identified and policies are being developed
- MHV program office is eager to work with researchers
- Goal is to make MHV useful for research as well as for clinical care and practice

## Acknowledgements and references

- Special thanks to the MHV Program Office, PVA, and SCI/D Services for their ongoing commitment to this project
- Contact us with any questions: _[Frances.Weaver@va.gov](mailto:Frances.Weaver@va.gov)_, _[Timothy.Hogan@va.gov](mailto:Timothy.Hogan@va.gov)_, _[Bridget.Smith@va.gov](mailto:Bridget.Smith@va.gov)_
- References
- Brillhart, B. (2007). Internet education for spinal cord injury patients: Focus on urinary management. *Rehabilitation Nursing, *32(5), 214-219.
- Burkell, J.A., Wolfe, D.L., Potter, P.J., & Jutai, J.W. (2006). Information needs and information sources of individuals living with spinal cord injury. *Health Information and Libraries Journal, *23, 257-265.
- Drainoni, M., Houlihan, B., Williams, S., Vedrani, M., Esch, D., Lee-Hood, E., & Weiner, C. (2004). Patterns of Internet use by persons with spinal cord injuries and relationship to health-related quality of life. *Archives of Physical Medicine and Rehabilitation, *85, 1872-1879.
- Edwards, L., Krassioukov, A., Fehlings, M.G. (2002). Importance of access to research information among individuals with spinal cord injury: Results of an evidence-based questionnaire. *Spinal Cord, *40, 529-535.
- Hauber, R.P., Vesmarovich, S., Dufour, L. (2002). The use of computers and the Internet as a sournce of health information for people with disabilities. *Rehabilitation Nursing, *27(4), 142-145.
- Spinal Cord Injury Quality Enhancement Research Initiative (SCI QUERI). (2008). QUERI fact sheet: December 2008.
- Vaidyanathan, S., Glass, C.A., Soni, B.M., Bingley, J., Singh, G., Watt, J.W.H., & Sett, P. (2001). Doctor-Patient communication: Do people with spinal cord injury wish to receive written information about their medical condition from the physicians after an outpatient visit or after a readmission in the spinal unit? *Spinal Cord, *39, 650-653.