San Diego, CA—November 6, 2017
A free telephone support and education program for people with lupus is a valuable resource to help them cope with the disease, according to a study at Hospital for Special Surgery (HSS) in New York City.
"At a time when technology is moving so quickly and we’re moving to different modes of communication, our study shows that telephone communication is still a viable way to connect with people all over the world to support them and educate them about chronic illnesses such as lupus," said Jillian Rose, LCSW, MPH, assistant director, Community Engagement, Diversity and Research, Social Work Department at HSS. "The service, offered by Hospital for Special Surgery, provides callers with solid support by trained peer counselors."
The study on the lupus support line was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals annual meeting on November 6 in San Diego.
LupusLine®, established in 1988, is free and available to the public. People find out about the service through referrals from their physicians, lupus organizations, the Internet or word-of-mouth, and calls come in from around the world. In addition to the United States, volunteers have counseled callers from Canada, Europe, South America, Jamaica, China and India. The number of calls has more than doubled since 2005, averaging 80 to 100 per month.
A clinical social worker conducts an initial screening and assessment, matching the caller with a trained volunteer and scheduling a time for the private counseling session. Many callers receive ongoing support on a weekly, biweekly or monthly basis. Counseling is available in English and Spanish. Services in Chinese are provided through another HSS program, LANtern®.
"Volunteers, most of whom have lupus themselves, receive 20 hours of training to acquire skills related to counseling, support and active listening. Bimonthly seminars provide them with additional education," explained Priscilla Toral, LCSW, program manager, LupusLine® and Charla de Lupus®/Lupus Chat. "Four of the counselors have been with the support line since it was established in 1988."
"Lupus can be very isolating," said Rose. "Friends and families may not understand the illness, so it’s very valuable for the caller to have a peer counselor, someone with similar experiences, who will listen and help to guide them."
To assess the support line, a 60-item survey was administered to callers matched with a peer-counselor between 2015 and 2017. It collected information on demographics, satisfaction with the screening process and peer counselors, lupus management, coping and the overall impact of the service.
The questionnaire was completed by 23 callers − 72% of those contacted – ranging in age from 30-80, with 67% ages 40-59. When asked about their initial reasons for calling, 68% indicated they were seeking emotional support, as well as lupus education and resources.
The vast majority of respondents (95%) indicated that their expectations were met. Seventy-two percent noted that having someone knowledgeable about lupus was the most valuable aspect of the call. The majority of participants said the LupusLine® helped them feel less isolated, with one caller commenting, "I feel less alone."
Additional survey results:
The LupusLine® number is 866-375-1427.
Study Title: "Evaluation of a Longstanding Telephone Peer Counseling Service on People with Systemic Lupus Erythematosus and Their Loved Ones [abstract]." Arthritis Rheumatol. 2017; 69 (suppl 10)
Authors: Toral P, Flores MT, Horton R, Rose J. All at Hospital for Special Surgery
About HSS | Hospital for Special Surgery
HSS is the world’s leading academic medical center focused on musculoskeletal health. At its core is Hospital for Special Surgery, nationally ranked No. 1 in orthopedics (for the ninth consecutive year) and No. 3 in rheumatology by U.S.News & World Report (2018-2019). Founded in 1863, the Hospital has one of the lowest infection rates in the country and was the first in New York State to receive Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center four consecutive times. The global standard total knee replacement was developed at HSS in 1969. An affiliate of Weill Cornell Medical College, HSS has a main campus in New York City and facilities in New Jersey, Connecticut and in the Long Island and Westchester County regions of New York State. In 2017 HSS provided care to 135,000 patients and performed more than 32,000 surgical procedures. People from all 50 U.S. states and 80 countries travelled to receive care at HSS. In addition to patient care, HSS leads the field in research, innovation and education. The HSS Research Institute comprises 20 laboratories and 300 staff members focused on leading the advancement of musculoskeletal health through prevention of degeneration, tissue repair and tissue regeneration. The HSS Global Innovation Institute was formed in 2016 to realize the potential of new drugs, therapeutics and devices. The culture of innovation is accelerating at HSS as 130 new idea submissions were made to the Global Innovation Institute in 2017 (almost 3x the submissions in 2015). The HSS Education Institute is the world’s leading provider of education on the topic on musculoskeletal health, with its online learning platform offering more than 600 courses to more than 21,000 medical professional members worldwide. Through HSS Global Ventures, the institution is collaborating with medical centers and other organizations to advance the quality and value of musculoskeletal care and to make world-class HSS care more widely accessible nationally and internationally.