Delivering National and Regional Parkinson’s Disease Caregiver Support:

SFVA Nurses’ Pilot Project Uses Technology To Make A Difference

Outcomes and Challenges• 750 invitations were mailed, over 350 caregivers

registered to attend this course, with a 20% no-show rate. More attendees attempted to register than could be hosted indicating a strong demand for this type of educational seminar. Many caregivers stated their difficulty of getting out of the home to attend a conference, despite their desire. Some caregivers who could not travel to a local transmission site connected from home using a VANTS call-in line.

• Nursing alliances were made with each participating VA site and new alliances were made with non-VA sites for outreach to remote under-served regions in Northern California. Additional out-of-state sites were invited but were unable to participate due to lack of local nursing and/or clerical support.

• Despite superb support by VISN 21 IT specialist,

one key video connection bridge failed and intermittently dropped the transmission to three sites, requiring manual reconnection, resulting in lost opportunity to hear all lecturers. Some VA VTEL sites used small TV screens, which was not conducive to large viewing audiences. However, attendee’s evaluations were overwhelming positive and we have increased our referrals since this outreach effort.

• Multiple requests were received for posting the videotaped content on our VA Web Site. However, Federal guidelines require “Closed Captioned” features (for the hearing impaired) for all posted educational videos; applying this technology is our current challenge. Presently only slides from the course are posted on the PADRECC Web site.

What We Learned & Future Directions

• Unanimous and national interest in additional Caregiver Conferences! We plan to revise the course to include interested patients and caregivers in November 2008.

• Significant appreciation by caregivers for offering conference locally and avoiding costly travel.

• VA VTEL technology varied widely from station to station; we will limit future connections to our local Bridge until other VA VTEL bridge sites are upgraded.

• Some patients who attended with their caregivers were unable to tolerate a six hour educational event, due to fatigue. Caregivers requested shorter classes and we will limit our next VTEL conferences to four hours.

• We are significantly encouraged to continue exploration and development of outreach connections with VA patients in California’s rural Northern Sierra Health Network regions.

Goals • To promote PADRECC tertiary-level outreach to

caregivers of Parkinson’s disease patients in VISN 21 and beyond using available technology.

• To establish a network of support and education between geographically remote caregivers of Parkinson’s disease (PD) patients and the San Francisco VA PADRECC Nursing staff.

Objectives• Conduct the first Parkinson Disease (PD)

Caregiver Educational Conference to local CBOCs, other VAMC, and remote rural sites regionally/nationally using video teleconferencing technology.

• Offer caregiver support strategies to manage the PD patient in the home, maximizing quality of life for the Veteran PD patient and the Caregiver, and learn how to access established VA and community services resources when needed.

BackgroundPatients with Parkinson’s disease (PD), the 2nd most common neurodegenerative disorder after Alzheimer's disease, often have multiple motor and non-motor symptoms that challenge both health care providers and caregivers. Caregivers face unique challenges learning to identify, prevent, and proactively treat common problems of Parkinson’s disease before they become medical or social emergencies. At the same time these caregivers need support to be able to care for their family member while maintaining their own health and social issues.

With the burden of caregiving, it is both economically and emotionally costly for caregivers to travel to the SFVA. We developed an educational outreach pilot project to educate and support caregivers of Parkinson’s patients beyond our SFVA PADRECC. We collaborated with tertiary-level movement disorder experts using available VA technology to deliver education to regional VA’s and our out-of-state PADRECC Consortium Centers (network).

The pilot project was called the Parkinson’s Disease Caregiver Conference, used video teleconferencing technology in addition to on-site live broadcasting, and occurred on November 15, 2007.

Who Participated in the Parkinson’s Disease Caregiver Video Teleconference? San Francisco – 30 participants, two rooms

Santa Rosa – 9 participantsUkiah – 4 participants

Eureka – 4 participantsHonolulu, Maui – 50 participants

Reno – 45 participantsFresno – 20 participants

Palo Alto – 20 participantsMartinez – 16 participantsRedding - 20 participants

Sacramento – 12 participantsChico – 15 participants

Outside VISN 21 VA Sites & PADRECC Consortium VA sites:

Ann Arbor – 40 participants Minneapolis – 10 participantsSalt Lake City – 4 participants

Private, Non-VA Sites:Santa Rosa Junior College – 12 participants

Northern Sierra Rural Health Network, Trinity County – 12 participants

Telephone VANTS Call – In line 12 from Ohio, Hawaii, New York,

Sacramento, Los Angeles, and Houston

Seminar Conception, Collaboration and Coordination

The initial concept was to offer caregiver outreach to

remote sites using available technology. This Nurse-championed course coordinated VA’s first Parkinson’s National Caregiver Tele-conference for 18 VA clinic and hospital video sites.

• Program developed with SF PADRECC staff and a

Honolulu Geriatrician who remotely transmitted his lecture.

• SF PADRECC Staff assisted with 350 calls to register participants and host the “live” SFVA VTEL transmission.

• SFVA and VISN 21 Information Technology staff provided day-long technical support, using four VTEL Bridges to transmit to all 18 sites.

• VA programmer provided names of patients with ICD-9’s of Parkinson’s disease in mailing label format for brochure.

• SF PADRECC & Volunteer Staff assisted in mailing out 750 caregiver invitations.

• This Caregiver Course was advertised on the SFVA PADRECC Web Site and in non-VA, Bay Area PD support group newsletters. The class was linked to Google search function for greater visibility.

Special acknowledgement to: Jason Funk IT Specialist SFVA for his Web site posting, and technological support and to Larry Kennedy, VISN 21 IT Specialist who coordinated the 18 VTEL connections for the 2007 conference. And, special thanks to Lorraine Anzaldo of PADRECC for producing professional brochures.

Brochure sent to VA Caregivers

Included with Brochure

. Caregiver Video-Teleconference

This pilot project was unique as it unified Parkinson’s caregivers from an entire VISN, currently served by various programs and providers, and integrated them with the VA's designated tertiary center: the San Francisco PADRECC. It also connected three of our out-of-state PD Consortium affiliate centers.

This outreach, education, and support project integrated existing VA video conferencing systems (VTEL) that have been successfully used within the VA around the country to connect administrators, providers, and patients.

Susan L. Heath, RN, MS, Movement Disorders Clinical Nurse Specialist and Elaine Lanier, RN, MS, Clinical Research Nurse ManagerPADRECC (Parkinson’s Disease, Research, Education and Clinical Center) San Francisco Veterans Affairs Medical Center

National Outreach Sites

PADRECC Nurses

Participating Consortium VA’s: Minneapolis, Ann Arbor & Salt Lake City