Arthritis & Rheumatism, Volume 60,
October 2009 Abstract Supplement
The 2009 ACR/ARHP Annual Scientific Meeting
Philadelphia October 16-21, 2009.
LANtern (Lupus Asian Network): Evaluation of An Innovative National Program
Tran, M., Horton, R., Yee, A., Paget, S.
Launched in 2003 with a mission to support, empower, and enhance quality of life for Asian-Americans with SLE and their loved ones, Hospital for Special Surgery's LANtern (Lupus Asian Network) is a national resource for its peer based telephone SupportLine and bilingual Chinese educational publications. This complex illness affects Asian-Americans 23x as often as whites.
We developed a telephone evaluation for the 101 SupportLine users with lupus or family members who used the program from 2003 2006. The 31-item survey consisted of Likert scale and open-ended questions to assess user demographics, program satisfaction, SLE impact, and service recommendations. Interviews were conducted in users' preferred language, English or Chinese (Mandarin/Cantonese), by 2 volunteers not otherwise linked with the program.
We completed 24 interviews. Attrition was due to address change, lack of return calls, or refusal. Of our sample, 22 were female; 18 with SLE; 5 were parents and 1 adult child; 21 were born in other countries, with the majority from China (50%) and Hong Kong (21%). Most callers (42%) were between ages 4655, followed by 2635 (25%). More than half (54%) were monolingual in their native language/dialects, in contrast with a few (13%) in English only.
Fifty percent had SLE < 5 yrs and 33% had SLE >10 yrs. Almost half (46%) stated that SLE interfered with their everyday life or the lives of their loved ones with SLE most of the time, employment (63%), relationship with spouse/partner (42%), and social activities (42%). Considerable anxiety about the future was expressed (63% sometimes/very often). A majority of those with lupus (59%) reported being a burden to their family sometimes/very often, while 50% reported sometimes feeling down, depressed or hopeless.
Most users (55%) learned of LANtern via Chinese media, health fairs and word of mouth; an additional 37% were referred by social service/health care agencies. Initial contact was prompted very much by a desire to learn more about the illness (54%) and to relieve psycho-social concerns (34%). A significant number (71%) indicated a better understanding about lupus and the receipt of emotional support, and 55% felt less alone, despite the contacts being brief, with 63% reporting 12 contacts and 25% 35. 67% reported "very important" that the person they spoke with has a similar cultural or language background. Program satisfaction was high, with 92% reporting being extremely/satisfied, and 96% would recommend the program to others. Additional service needs were also assessed, with recommendations consistent, culturally and linguistically, with their reported desire of peer connections, and family/group oriented activities.
Our results, though limited by a small sample size, underscore that a culturally relevant service need is being met through our telephone peer counseling model for a community reporting significant impact of SLE on their lives. Additional program modalities have since been explored and enhanced for service expansion.
To cite this abstract, please use the following information:
Tran, M., Horton, R., Yee, A., Paget, S.; LANtern (Lupus Asian Network): Evaluation of An Innovative National Program [abstract]. Arthritis Rheum 2009;60 Suppl 10 :1860