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Study Shows Bilingual Lupus Support and Education Program Has Positive Impact

New York, NY—November 14, 2016

A bilingual support group addressing the psychological and educational needs of patients with lupus and their families is a valuable resource to help them cope, according to a study at Hospital for Special Surgery (HSS).   

The research, "Evaluating the Charla de Lupus (Lupus Chat)® Program’s Teen, Young Adult and Parent Support Group: Reaching the Hispanic/Latino Community through a Family Model of Support" was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals annual meeting on November 13 in Washington, DC.

"Lupus is a chronic autoimmune illness that not only affects a person medically, but also mentally and emotionally," said Melissa Flores, MPH, LMSW, program coordinator of Charla in the Department of Social Work Programs at Hospital for Special Surgery. "People with lupus may experience debilitating symptoms such as extreme fatigue, joint pain, and skin rashes. Additionally, there are often psychosocial challenges, such as feelings of isolation, adjusting to medications with difficult side effects, and coping with the invisible, unpredictable nature of the illness."

Research shows that chronic illnesses such as lupus have a wide-ranging impact on the family. HSS started Charla to offer help and strategies to patients and their loved ones for managing the disease. "Lupus disproportionately affects women of color," Flores explains. "Our program strives to address health disparities by serving African American and Hispanic/Latino communities through our family model of support and our bilingual/bicultural programming."

The free monthly, hospital-based program provides support and education to teens and young adults under age 30, as well as their loved ones. Conducted in English and Spanish, each two-hour session consists of a presentation by an expert on a subject of interest to patients, a workshop or an open discussion. Topics include medications, nutrition, research and doctor-patient communication.

Flores and colleagues set out to determine how much the sessions helped participants and their families, with particular interest in the impact on Hispanic/Latino group members. A 16-item survey in English and Spanish was distributed after seven group meetings between 2015 and 2016.

A total of 148 surveys were handed out, including questions on overall satisfaction, knowledge, coping and disease management. Separate analyses were conducted for teens and young adults versus their parents/caregivers. Responses were also classified by ethnicity.

A total of 141 surveys were returned, which represented 95% of those who had received the questionnaire. Fifty percent of the respondents were teens/young adults and half were family members. Seventy-three percent were female. More than half of the respondents (68%) were Hispanic/Latino, 29% were African American, 28% were another race, 23% were White and 13% were Asian.

The answers to open-ended questions showed substantial improvements in knowledge and coping strategies in areas such as explaining lupus to others and communicating with doctors.

Additional survey results:

  • 99% of all respondents reported overall satisfaction with the program
  • 94% agreed that the program increased their knowledge of lupus-related issues
  • 88% agreed that the groups helped them to cope
  • 90% agreed that they could apply what they had learned to manage lupus
  • 95% agreed that the program met their expectations
  • 98% agreed that the presenter was clear and informative
  • 96% agreed that they would recommend the program

While overall ratings were high, the survey indicated that the meetings were particularly beneficial to Hispanics/Latinos. A higher percentage of Hispanics/Latinos indicated that the program increased their knowledge of lupus, helped them with disease management and coping, and met their expectations.

"Our results demonstrate the value of the group and our success in engaging patients with lupus. The evaluation also underscores the relevance of the family model of support when serving a diverse group of chronically ill teens and young adults and their caregivers," Flores said.

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Study Title: "Evaluating the Charla De Lupus (Lupus Chat)® Program’s Teen, Young Adult and Parent Support Group: Reaching the Hispanic/Latino Community through a Family Model of Support"

Authors: Melissa T. Flores1, Jillian A. Rose2, Priscilla Toral1, Roberta Horton1, Dariana M. Pichardo1, Lillian Mendez1 and Lisa F. Imundo3, 1Social Work Programs, Hospital for Special Surgery, New York, NY, 2Hospital for Special Surgery, New York, NY, 3Assoociate Professor of Pediatrics in Medicine - Rheumatology, Columbia University Medical Center, New York, NY

Disclosures: M. T. Flores, None; J. A. Rose, None; P. Toral, None; R. Horton, None; D. M. Pichardo, None; L. Mendez, None; L. F. Imundo, None.

 

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.

 

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