Research highlights include studies that have found an initial high-risk antibody profile for antiphospholipid syndrome (APS) tended to remain high in pediatric patients, a correlation between obesity and more severe disease flare symptoms in patients with early rheumatoid arthritis (RA), people with inflammatory arthritis face challenges in maintaining employment, a link between aging and physical activity, and people with vasculitis frequently suffer from frailty, new research findings in antiphospholipid syndrome (APS)  insights on improving communications with diverse patient populations, and and new research on reproductive health.

A High-Risk Antiphospholipid Antibody Profile Matters in Pediatric Patients with Antiphospholipid Syndrome

A new study by HSS investigators including Jheel Pandya, MD, Karen Onel, MD, Doruk Erkan, MD, MPH has found that an initial high-risk antibody profile for APS tended to remain high in pediatric patients.

HSS Research Shows Obesity Is Associated with Worse Flare Symptoms and Quality of Life in People with Early Rheumatoid Arthritis 

A recent study from HSS and others has found a correlation between obesity and more severe disease flare symptoms that negatively affect quality of life in patients with early RA, a systemic, autoimmune, inflammatory disorder affecting multiple joints in the body. 

Study Finds People with Inflammatory Arthritis Face Significant Psychological Challenges in Maintaining Employment

An HSS study presented by Joan Westreich, MSW, LCSW, social work coordinator, Early Arthritis Initiative at HSS reveals a significant psychological impact related to inflammatory arthritis patients’ efforts to maintain employment while coping with the challenges of their illness.

New Study Shows Perception of Aging is Linked to Level of Physical Activity in Arthritis Patients

People with arthritis who report more negative feelings about how they are aging tend to get less physical activity and perceive themselves as less healthy, according to a new study by researchers at HSS and Weill Cornell Medicine. However, self-perception of good health explained the effect of negative thinking – providing an opportunity for clinicians to focus on a patient’s outlook on aging as well as their overall health. 

New Study Identifies Outcomes Associated With Frailty in Patients With Vasculitis

According to a new study from researchers at HSS and colleagues from the University of Pittsburgh and the University of Pennsylvania, people with vasculitis frequently suffer from frailty, a process that can affect our ability to recover after an illness or a fall, which in turn is linked to poor health outcomes.

New Antiphospholipid Syndrome Research Findings Presented at ACR Convergence 2023

Investigators from the Antiphospholipid Syndrome Alliance for Clinical Trials and International Networking (APS ACTION) presented new research findings in antiphospholipid syndrome (APS) at the American College of Rheumatology (ACR) Convergence 2023, the ACR’s annual meeting.

HSS Shares Strategies to Enhance and Enable Communication with Language-Diverse Patients at Annual ACR Convergence

Bella Elogoodin, vice president, Service Excellence & Language Access at HSS, shared strategies to enhance and enable communication with language-diverse patients at the American College of Rheumatology (ACR) Convergence 2023 in a session titled, “Lost in Translation: Creating Access Pathways for Language-Diverse Patients in Rheumatic Care Settings.”

HSS Presents New Reproductive Health Research at the ACR Convergence 2023  

At this year’s American College of Rheumatology (ACR) annual meeting, HSS presented a number of studies focused on reproductive health for patients with systemic lupus erythematosus, rheumatoid arthritis, and other rheumatic diseases, including issues related to fertility, sexual function, use of contraception and HPV vaccination.

“Studies have demonstrated the benefits of online peer support forums in meeting the mental health, disease self-management and coping needs of people living with a chronic illness,” explained Giselle Rodriguez, LCSW, social work program coordinator for Charla de Lupus (Lupus Chat)® at HSS. “Although in-person meetings were no longer viable during the pandemic, the virtual groups offered an effective platform for patients to continue to meet with their peers, reduce isolation and expand the reach to additional family members at home and across the country.”

Rodriguez presented the study, “Evaluating the Effectiveness & Impact of an In-Person Peer Support Group That Transitioned to a Virtual Platform During the COVID-19 Pandemic,” at ACR Convergence 2022, the annual meeting of the American College of Rheumatology, in Philadelphia on November 12.

At the monthly support group, which has been ongoing at HSS since 2001, social workers, rheumatologists and other health care professionals offer information on topics related to lupus, such as medications, nutrition, pain management and research. The bilingual social work team translates all presentations into Spanish to distribute to Spanish-speaking members prior to the Zoom meetings. In addition, all communications in the chat box are translated live during the sessions to encourage Spanish speakers to participate. In some groups, simultaneous translation is provided.

To assess the effectiveness of the meetings, members received an online survey with multiple-choice and open-ended questions after nine virtual sessions from September 2020 to June 2021. Researchers conducted a comparison analysis with surveys completed by in-person groups held in 2018-2019 to assess reach, satisfaction, knowledge, coping and disease management.

Reach increased significantly after transitioning to a virtual group, with 373 participants versus 177 in 2018-2019. Responses highlighted the benefits of a virtual group, such as removing transportation barriers, the ability to join the meeting from anywhere and ease of participation by sharing a link. Limitations included inability to connect one on one, no internet access and challenges using Zoom.

Key findings:

- 99% of respondents reported satisfaction with the virtual groups
- 98% agreed that the groups increased their understanding of lupus-related issues
- 98% agreed the program met their expectations
- 97% agreed that they would recommend this group
- 95% agreed they could apply what they learned to manage lupus
- 93% agreed the groups helped them cope with lupus

No significant differences were observed when comparing most answers from in-person groups conducted in 2018-2019 to the virtual group. However, in the virtual group, there was an 8% increase in respondents indicating that the sessions helped them cope with lupus.

Survey comments from participants demonstrated that they appreciated the virtual format:

"It was an excellent idea to transition from in-person programming to virtual. Charla should keep it virtual or a mixture of programming and virtual to keep it easy to attend all the meetings without missing any."

"Charla has made great use of Zoom for each of their programs. Although the experience is not the same as in person, every program was just as informative."

"I love the Zoom meeting since it is a way for everyone to stay connected from home healthy and safe."

“I would not have been able to attend the meetings due to location.”

The monthly lupus support groups and special events continue to be hosted online through Zoom. Rodriguez and colleagues are assessing participants’ interest in a hybrid model utilizing both in-person and virtual groups going forward.

Authors: Giselle Rodriguez¹, Priscilla Calvache¹, Lillian Mendez¹, Kimberly Cabrera¹, Roberta Horton¹, Lisa Imundo² and Jillian Rose-Smith¹, ¹Hospital for Special Surgery, New York, NY, ²New York Presbyterian Hospital - Columbia Campus, New York, NY

Michael Lockshin, MD, received the ACR Distinguished Clinician Scholar Award, which honors a rheumatologist who has made outstanding contributions in clinical medicine, clinical scholarship or education.

Melanie Smith, MD, PhD, received the ACR Distinguished Fellow Award, which recognizes clinical and research fellows who are in a rheumatology fellowship training program and have performed meritoriously.

Adena Batterman, LCSW, MSW, received the ARP Distinguished Clinician Award. It is presented to an ARP member who is engaged in clinical practice and demonstrates outstanding clinical expertise in arthritis and the rheumatic diseases.

"HSS is extremely proud of our team members who have been honored with these notable awards,” said Louis A. Shapiro, president and CEO of HSS. “We warmly congratulate them for their contributions and achievements in patient care, research, support and education.”

Michael Lockshin, MD

Dr. Lockshin’s award follows a career spanning more than four decades at HSS. When asked about receiving the honor, he said, “I think it honors those who surrounded and challenged me more than it does me—patients who asked hard questions; the team led by Charles Christian that trained me and with whom I was privileged to work; intellectually curious colleagues, students and fellows; Hospital for Special Surgery, which gave me freedom to pursue goals I thought were worthwhile; and my wonderful family.”

Director emeritus of the Barbara Volcker Center for Women and Rheumatic Disease at HSS, Dr. Lockshin is a preeminent expert in the long-term care of chronically ill patients. His research enabled him to develop special expertise in solving health-care issues associated with systemic lupus erythematosus, antiphospholipid antibody syndrome and other autoimmune diseases that predominantly affect women.

Dr. Lockshin continues to conduct research and engage in mentoring activities at HSS. His current work focuses on diagnostic uncertainty, the topic of an international conference he organized last year. He has also published a white paper and written a book on the subject.

Melanie Smith, MD, PhD

Dr. Smith describes her Distinguished Fellow award as an incredible honor. “It is a testament to the opportunities I have had during my fellowship training and the amazing group of mentors that have supported my development as both a physician and a scientist,” she said. “I am excited to embark on a career dedicated to understanding mechanisms of disease with the goal of improving care for our patients.”

Dr. Smith, now a staff rheumatologist at HSS, specializes in treating inflammatory arthritic conditions such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Sjogren's syndrome and gout/pseudogout. She also treats patients with osteoarthritis. Her research focuses on how cells that make up the healthy joint lining change when an individual develops rheumatoid arthritis.

Adena Batterman, LCSW, MSW

Adena Batterman, recognized with the ARP Distinguished Clinician Award, is senior manager of the Inflammatory Arthritis Support and Education Programs at HSS. “I feel honored and grateful to be recognized for clinical work and research that enhances the lives, and elevates the voices, of patients,” she said. “I’m grateful to be engaged in work made possible by colleagues and mentors that continues to have deep personal and professional meaning to me.”

Ms. Batterman develops and oversees support and education programs designed to address the multifaceted needs of patients with inflammatory arthritis during the many stages of their illness. The programs provide essential information to help participants make informed decisions about management and treatment; offer peer support and coping strategies; and create a forum in which members can share their experiences and feelings.

“I commend our HSS colleagues who have been honored by two of the foremost organizations advancing the field of rheumatology,” said S. Louis Bridges, Jr., MD, PhD, physician-in-chief and chief of the Division of Rheumatology at HSS. "Our colleagues’ hard work, skill and dedication have enabled them to excel in their respective specialties. Their contributions have helped HSS achieve a leadership role in rheumatology to improve the lives of patients with exceptional care and vital research.”  

“We are proud to receive this recognition from the Human Rights Campaign Foundation," said Louis A. Shapiro, HSS president and CEO. "It indicates we are fulfilling our mission to provide the highest quality of care for all and affirms our commitment to fostering a welcoming and inclusive environment for the LGBTQ+ community and their families. “

Every year, the Human Rights Campaign Foundation recognizes health care facilities that participate in the HEI for their dedication and commitment to LGBTQ inclusion. In order to receive the LGBTQ Healthcare Equality Leader designation, an institution must receive the maximum score of 100 points on the Healthcare Equality Index survey, which evaluates hospitals and health care facilities on LGBTQ-inclusive policies and practices. The survey covers four key areas: nondiscrimination policies and staff training; patient services and support; employee benefits and policies; and patient and community engagement.

Health care facilities are “making it clear from their participation in the HEI that they stand on the side of fairness and are committed to providing inclusive care to their LGBTQ patients,” said HRC President Alphonso David. “We commend all of the HEI participants for their commitment to providing inclusive care for all.”

“This designation is in line with our HSS values of diversity and inclusion, which underscore our commitment to equity and a sense of belonging for patients, employees and communities,” said Bryan T. Kelly, MD, MBA, HSS surgeon-in-chief and medical director. “We will continue to address health care disparities that affect vulnerable communities so we can continue to provide everyone with the outstanding, patient-centered care they deserve."

HSS has worked to ensure that best practices are in place to provide patient-centered care for LGBTQ+ patients and their families, according to Melissa Flores, outcomes manager in the Department of Social Work Programs at HSS. For example, both patient and employee non-discrimination policies specifically prohibit discrimination based on sexual orientation and gender identity, and the HSS visitation policy is LGBTQ+ inclusive.

HSS has a hospital-wide LGBTQ+ Committee, with Susan Flics, vice president of Operations as the executive sponsor and Jillian Rose, PhD., director of Community Engagement, Diversity and Research as the team leader. “This is a multidisciplinary group of leaders who are committed to planning, creating and implementing appropriate education interventions, guidelines, and policies that promote the highest quality patient experiences for LGBTQ+ patients,” Ms. Flics explains. “It also promotes a working environment that reflects dignity and respect for our employees who identify across the LGBTQ+ spectrum.”

All staff are required to complete a mandatory LGBTQ+ sensitivity training each year as a part of the annual staff development modules. In addition, department-specific training is conducted across the board for both clinical and nonclinical staff.

“Just last year, more than 700 staff were trained in person on Fostering an LGBTQ+ Inclusive Environment, which covers LGBTQ+ health disparities, federal and state regulations, HSS policies, and best practices for providing care to LGBTQ+ patients and their loved ones,” Dr. Rose noted. “Additionally, HSS staff completed 150-plus hours of training over the last two years—above and beyond what is required for the HEI application.”

Over the years, HSS has also deepened its commitment to integrating preferred name, pronouns, gender identity and sexual orientation data collection into the electronic medical record, according to Ms. Rose.

For the past three years, HSS has been a proud sponsor of the NYC Pride March, highlighting its commitment to caring for and supporting LGBTQ+ patients and HSS employees.

About the Human Rights Campaign Foundation

The Human Right Campaign Foundation is the education arm of America's largest civil rights organization working to achieve equality for lesbian, gay, bisexual, transgender and queer people. HRC envisions a world where LGBTQ people are embraced as full members of society at home, at work and in every community.

The findings were reported at the American College of Rheumatology/Association of Rheumatology Professionals annual meeting on November 11 in Atlanta.

“It is a misconception that lupus affects only women. Although most of those affected are female, studies show males represent an estimated 4 to 22% of patients,” explains Priscilla Toral, LCSW, program manager of Lupus Line^®/Charla de Lupus (Lupus Chat)^®, in the Department of Social Work Programs at HSS, which offers numerous support and education programs for people with lupus and their families. “Research has shown that the clinical presentation of lupus in men is very similar to what women experience. However, men often have more severe disease and tend to seek medical attention and supportive care less often than females.”

Limited research exists regarding the specific medical, psychosocial and support needs of men with lupus. Toral and colleagues at HSS set out to identify their self-reported needs and concerns, as well as their potential interest in support forums geared toward men.

An 85-question survey was disseminated nationally to males over 18 with lupus. The survey was advertised via online forums, at major hospitals serving lupus patients in New York City and through local and national lupus groups. The survey assessed four core areas: health status and quality of life, health behavior and lifestyle, access to care and interest in programs specifically designed for men. Participants completed the surveys via an online link.

A total of 112 respondents participated in the survey, with 61% identified as white, 21% as black/African-American, 15% as Hispanic and 31% as other. Mean age was 26 and mean time since diagnosis was 10 years. Forty-nine percent of males were employed/self-employed, while 46% were unemployed/unable to work. Fifty-three percent had an annual income of more than $50,000 and 59% had some college or an advanced degree. Ninety-four percent reported having health insurance. Almost all (92%) were being treated by a rheumatologist.

The researchers reported the following findings:

• In rating their overall health, 65% of respondents reported it as “fair/good” and 21% reported it as “poor.”
• The majority (76%) reported worrying more about their future since their diagnosis.
• Most (83%) reported that having lupus limits their activities of daily living. When asked about the single most important way it affected daily life, responses included fatigue and pain, with 48% reporting feeling pain daily.
• Fifty-three percent of respondents reported that lupus affects their sexual health, in the form of less sexual desire and satisfaction (52%), limited motion (45%), and impotence (47%).
• When asked if they feel comfortable talking with their doctor or rheumatologist about their sexual health, 70% of respondents strongly agreed/agreed.
• When asked if they have received education about or treatment for their sexual health, 69% of respondents reported that they had not.
• When asked how often they followed medical advice, 59% said always. The reasons for not following medical advice included worry about treatment side effects (44%) and that treatment would not help (43%).
• More than half (58%) reported feeling depressed for several days/more than half the days in the preceding two weeks.
• Regarding support and coping with lupus, 52% reported receiving no support, and 84% had never taken a class to learn self-management and coping skills.
• When asked if they would be interested in receiving support to help them cope, 40% were interested/very interested; 44% reported being unsure; and 15% were not interested.
• When asked about the type of support platform they would prefer, 77% indicated online; 71% a lupus app; 69% a social group; and 67% a support and education group.
• When asked how likely they would be to participate in a male-only support group, 50% reported likely/very likely; 27% unlikely/very unlikely; and 23% were unsure.

“This study provides important information about the physical and emotional health of males with lupus, as well as their interest in psychosocial support,” said Toral. “The next step would be to conduct focus groups to better understand their specific support needs, with the ultimate goal of developing programs to ensure those needs are being met.”

Additional study authors include Jillian Rose, PhD, MPH, LCSW; Roberta Horton, LCSW, ACSW; Ambar Tavera; and Natalia Irvine, MPH, all from HSS.

Jillian Rose, LCSW, MPH, director of community engagement, diversity and research at HSS, explains that biases can be rooted in race, age or gender - and all have real consequences.

"Not assessing social history or challenges can lead to inappropriate care, such as a patient not being able to afford the medication we prescribe," Rose says. "That treatment has fallen apart as soon as that patient has left the room."

Adena Batterman, MSW, LCSW, senior manager of inflammatory arthritis support and education programs at HSS, explains that rheumatic disease has a profound impact on patients physically and emotionally. In order to provide patient-centered empathic care, you must pay attention to both.

"Each patient who walks into our office has their own unique story and background, so we must broaden the focus of our inquiry and discussion like the lens of a camera," Batterman says. "It requires adjusting and widening the field of vision."

Read the full article at The-Rheumatologist.org.

Rose explains that her interest in health stemmed from growing up in Guyana. She migrated when she was 11 years old and had a chance to see the broken healthcare system first hand. "Being around that type of environment really inspired me to pursue a career in looking at how do I best educate people about your own health and how do I help to motivate others and negotiate the healthcare system."

She talks about her education at Providence and how that shaped her career after stumbling into the social work field. She references one class she took that looked at the ecological model of how a person is provided care in a healthcare setting and how their own neighborhood impacts their lives. 

Listen to the full podcast at Providence.edu.

The award honors an ARHP member "who has demonstrated sustained excellence in the teaching of patients and students/trainees, including health professional students, medical students, residents, graduate students, and/or fellows, with their primary focus being rheumatology-related content," according to the association.

Ms. Rose, who began her career at Hospital for Special Surgery in 2005, is recognized by her colleagues as an innovative thought leader, talented educator and compassionate individual. She dedicates much of her work to understanding inequalities in rheumatology care and addressing them through educational programs for health professionals, as well as patients, to promote the highest quality of care for all.

Ms. Rose says she was humbled and surprised to receive the Distinguished Educator Award. "To be recognized for doing work that is your life passion is an amazing honor," she said. "This award is especially meaningful to me as a social worker and a change-agent for people who are disproportionately affected by negative health care outcomes. I am committed to education as a platform to empower both patients and health care providers to achieve the best health care outcomes."

"It is hard to imagine a more passionate, innovative, and committed rheumatology educator than Jillian," said Roberta Horton, LCSW, ACSW, assistant vice president, Department of Social Work Programs at HSS. "Her vision and implementation of rheumatology educational initiatives seek to engage others to be curious and to be passionate about discovering, learning and integrating new knowledge. Jillian accomplishes this not only through her teaching, supervision, presentations, research, and program development, but also by creating safe learning environments from which enhanced self-awareness and understanding emerge."

Growing up in an impoverished village in Guyana, Ms. Rose began to experience firsthand the impact that a lack of health education and access can have on communities. She moved with her family to the U.S. when she was 11, and later began her undergraduate studies at Providence College in Rhode Island. While taking a course in public health, she began to truly understand the impact of poorly-designed and inaccessible health services on marginalized, minority communities. It was then that she found her calling and decided on a career in health policy and social work.

Ms. Rose fosters education in rheumatology care through a number of initiatives at Hospital for Special Surgery. She plays an integral role in the hospital’s Community Health Needs Assessment and Community Service Plan.

Since 2005, she has overseen Charla de Lupus (Lupus Chat)® and LupusLine® at HSS, nationally recognized peer support and education programs for people with lupus and their families. 

Ms. Rose has developed and implemented hospital-wide training for staff on working with multicultural populations and fostering an inclusive environment for the LGBTQ community. She chairs the LGBTQ Committee at HSS, providing ongoing leadership and support for the collection of data regarding gender identity, sexual orientation and race, ethnicity and preferred language.

As a member of the Disparities Research Committee at HSS, Ms. Rose participates in quality initiatives to develop appropriate tools and evaluation processes to ensure the highest quality care for all. She has served as principal and co-investigator on many studies impacting rheumatology care, including the development of a lupus app as a self-management tool for people with the condition.

More recently, she was co-investigator on a national study training research coordinators at nine hospital centers focused on engaging Latina and African American women to examine their treatment options for arthritis using a decision-making tool. 

Ms. Rose has shared her knowledge as a rheumatology educator through numerous national and international conferences and public forums. Her contributions include presentations at American College of Rheumatology-Association for Rheumatology Health Professionals national conferences; the European League Against Rheumatism (EULAR); the Office of Minority Health’s Leadership Summit; the Movement is Life National Caucus on Arthritis & Musculoskeletal Health Disparities; the American Hospital Association and the Greater New York Hospital Association.

In 2017, she gave a well-received presentation at HSS titled, "Understanding Implicit Bias and Its Impact on Clinical Practice, Decision-Making and Achieving Optimal Health Outcomes" in honor of National Professional Social Work Month.

For the past decade, Ms. Rose has volunteered with the Association of Rheumatology Health Professionals, serving as a member of the association’s Practice Committee, Marketing Committee, Executive Committee, and most recently of COIN, a new collaborative initiative to advance health equity.  

Ms. Rose’s vision and dedication have resulted in previous awards. In 2012, she received the Wholeness of Life Award from HSS, which recognizes a member of the hospital staff who has made a significant contribution to the quality of patient care. In 2010, she received the Emerging Social Work Leader Award from the National Association of Social Workers, New York City Chapter.

Ms. Rose earned a Master of Science degree from Columbia University School of Social Work in 2005, a Master’s degree in Public Health from George Washington University in 2015, and is currently a  PhD candidate in Public Health at Columbia University.

Rose received the award during the American College of Rheumatology (ACR)/ARHP Annual Meeting in Chicago on October 20, 2018.

"To be recognized for doing work that is your life passion is an amazing honor. This award is especially meaningful to me as a social worker and a change-agent for people who are disproportionately affected by negative health care outcomes. I am committed to education as a platform to empower both patients and health care providers to achieve the best health care outcomes," said Rose in a release.

Read the full article at patch.com.

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The study, "The Effect and Psychosocial Impact of a Longstanding Telephone Peer Counseling Service on Volunteers with Systemic Lupus Erythematos," was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals annual meeting on October 22 in Chicago.  

"Previous studies have demonstrated the value of peer counseling programs for people living with lupus and other chronic health conditions. In the current study, we set out to assess the impact on the volunteers themselves," said Priscilla Toral, LCSW, program manager of LupusLine®/Charla de Lupus (Lupus Chat)® at Hospital for Special Surgery. "We found that similar to the way the service helps callers, the counselor role positively impacts volunteers’ ability to cope with and manage lupus and reduces isolation."

LupusLine® offers peer support and education to people with lupus and their families. Established in 1988, the service is available to the public with a toll-free phone number. In addition to the United States, volunteers have counseled callers from Canada, Europe, South America, Jamaica, China and India.

The study found that in addition to having the opportunity to help others, counselors gained valuable knowledge about lupus from the 18-hour volunteer training program. Monthly seminars helped them work through challenges and provided a space for them to reflect on their illness.

"While having lupus may affect one’s self-esteem adversely, being able to use this experience to help others can be empowering," said Roberta Horton, LCSW, ACSW, assistant vice president, Department of Social Work Programs at Hospital for Special Surgery. "Volunteers also benefit from the feeling of mutual support, personal development, and further lupus knowledge gained through ongoing group meetings, educational seminars and individual supervision."

For their study, researchers distributed a 43-item online survey to volunteers. The counselors, all female, ranged in age from 30-79, with 30% between the ages of 60 and 69. They had served as a counselor for an average of 12 years.

The researchers reported the following findings:

• In terms of satisfaction, 91% of counselors indicated they were very satisfied with their role.
• The top reasons for becoming a counselor included an opportunity to help others affected by lupus (100% of respondents) and enhancing personal growth/development (73%).
• When asked about their reasons for continuing as a counselor, 82% said it was to meet others impacted by lupus and 73% identified the support of program staff.
• Most respondents (73%) reported that they had a better understanding of lupus since becoming a counselor.  
• In relation to coping, 64% indicated that they have coped better with lupus since becoming a counselor.
• The majority of counselors (73%) reported feeling less alone since volunteering.
• Almost half of the volunteers (46%) reported feeling less depressed since becoming a peer counselor.
• When asked if monthly seminars help them to better cope with lupus, 78% agreed, and 89% of counselors reported that the seminars provide a space for them to reflect on their disease.
• The volunteers indicated that the most rewarding part of their role was “educational information that helps me understand lupus better” and “the opportunity to be outside of my own illness and connect with others.”

"The study reinforces the two-way flow of psychosocial support received by counselors through their support of callers and ongoing connections with peers and program staff via monthly seminars," said Toral. "Our findings also highlight the continued relevance of a phone support service to people with lupus and opportunities for further research on the volunteer impact of peer-staffed programs."

"Dynamic, efficient and cost-effective, groups are adaptable to multiple practice environments with a range of institutional support, infrastructure and availability of trained group leaders," Westreich wrote.

According to the article, cognitive behavioral groups have reported improved outcomes for patients managing fatigue and pain.

HSS rheumatologist Theodore R. Fields, MD, FACP, also offered his perspective. "I highly recommend groups to patients who are considering them. I feel they provide an important service for our patients that is very hard for them to get in any other way. For instance, patients have been especially grateful to speak with other patients about their fatigue, since it is invisible to their spouses, partners and friends, yet is very real and challenging for them," he said.

Additionally, Westreich noted that HSS groups provide lectures by rheumatologists and a forum where patients can discuss their emotions living with a chronic illness.

Read the full article at the-rheumatologist.org.

Rose noted that the patient intake process is a good time to ask about the patient's sex at birth, gender identity, preferred pronouns and sexual orientation. At HSS, new patients are asked about their gender, sex at birth and preferred pronoun - and all information is entered into their electronic health record.

"Knowing the answers to those questions allows clinicians to refer to patients with dignity and respect, and fosters trust from the beginning of the medical encounter," she added.

The reporter also spoke to HSS patient Alexander William Rose Beckenstein, a transgender man, who is treated for mixed connective tissue disease (MCTD). He said that his "current doctor has been wonderful and fully respectful, but those interactions are few and far between." Mr. Beckenstein explained that some healthcare providers have made him feel like "just another female body" rather than an individual with his own unique identity.

When considering treatment options, Dr. Lockshin stressed that rheumatologists must consider the patient's sex, gender, family planning goals and sexuality.

"Choices of medications are dictated by the fertility and pregnancy desires," Dr. Lockshin said.  

"Being aware of these issues is a key first step. However, making the information relevant to clinical practice is critical," Rose explained.

According to Rose, HSS implemented mandatory training in 2015 for registration and patient access staff on LGBT healthcare disparities, sensitivities and potentially challenging patient scenarios.

"If a clinician selects the chart of a patient who has identified as intersex… a best practice warning pops up", said Rose. This function is to make the clinic experience feel more inclusive to patients.

Read the full article at the-rheumatologist.org. This also appeared in the July print issue.

Jillian Rose, LCSW, MPH, assistant director at HSS, discussed the value of incorporating the patient's perspective into the conversation about their treatment.

According to the article, considering what matters to the patient can lead to better patient outcomes, a better understanding of their condition, reduced anxiety, increased satisfaction with treatment decisions and greater willingness to undergo treatment.

"With the move toward more patient autonomy and the explosion of technology, patients are having conversations about their healthcare decisions on social media, with Facebook friends, on Twitter chats and with peers. If we don't involve the patient [in the conversation], we'll be left out of providing invaluable information to our patients that can influence their care and lead to better outcomes," said Rose.

"The first step in achieving shared decision making with patients is checking our own biases to ensure we are not unconsciously making recommendations based on our agenda, values and stereotypes," Rose added.

HSS social worker and senior manager of the Inflammatory Arthritis Support and Education Programs Adena Batterman, MSW, LCSW, encouraged providers to create an environment of empathic care as the foundation of shared decision making. She advised that clinicians should take part in mindfulness training, which is a way of thinking that enhances focus and clarity despite the pressures of a busy day to help physicians listen more carefully to their patients.

Joan Westreich, LCSW, social work coordinator of the Early Arthritis Initiative at HSS, noted that depression, anxiety and other mental health issues can impact patient-provider communication.

Westreich added that a diagnostic interview is imperative for assessing mental health issues to give physicians a better sense of when to refer patients for a mental health consult.

Read the full article at the-rheumatologist.org