Video Reference Library

1. Childhood Onset Lupus: Definition and Adolescent Experiences

 

Video Length: 4:31
Expert defines childhood onset lupus and four adolescent patients describe their experiences with diagnosis and treatment of the disease.


2. Childhood Onset Lupus: Transition to Adult Care

 

Video Length: 6:33
Young patients describe how they prepared themselves for the transition to adult rheumatology care and the challenges they faced, including finding doctors, making appointments and understanding insurance. Experts provide opening and closing remarks on the importance of preparing pediatric rheumatology patients for their transition to adult care to help them successfully manage their lupus.


3. Health Disparities in Lupus: Overview and Factors

 

Video Length: 2:40
Dr. Graciela Alarcòn (The University of Alabama at Birmingham) and Dr. David Wofsy (University of California San Francisco, School of Medicine) provide an overview of the disparities that exist in lupus, including prevalence, manifestations, and outcomes of the disease.


4. Health Disparities in Lupus: Access to Care

 

Video Length: 2:45
Dr. Ed Yelin (University of California San Francisco, School of Medicine) shares his insights on lupus patients’ access to care and the affect poor access can have on treatment and outcomes. A lupus patient, Ivana Ford-Neal, shares the challenges she has faced in accessing care and how they have impacted her treatment and ability to successfully manage her lupus.


5. Health Disparities in Lupus: Coordination of Care

 

Video Length: 2:01
Sisters, Ivana Ford-Neal and Michelle Stevens, both of whom have lupus, stress the need for doctors to work together to provide the best possible care to their patients. Dr. Ed Yelin (University of California San Francisco, School of Medicine) explains the need for “a captain of the ship” when it comes to lupus care.


6. Health Disparities in Lupus: The Importance of Cultural Competency

 

Video Length: 1:05
Dr. Graciela Alarcòn (The University of Alabama at Birmingham) explains the benefits of providing cultural competent care to patients of lupus, including language support, cultural knowledge and a diverse healthcare staff.


7. Health Disparities in Lupus: Manifestations and Outcomes

 

Video Length: 2:30
Dr. Graciela Alarcòn (The University of Alabama at Birmingham) discusses differences in outcomes based on race, ethnicity and socioeconomic status.


8. Nephritis: Impact and Treatments

 

Video Length: 7:07
Doctor and patient discuss the definition and impact of lupus nephritis and the patient’s experiences living with the disease. Dr. Bevra Hahn (University of California Los Angeles, School of Medicine); Liz Shaw Stabler.


9. What Lupus Patients Want Providers to Know: Facilitating Support Systems

 

Video Length: 4:34
Patients with childhood onset lupus give practitioners insight into how they can best support their patients who have lupus, including the importance of helping them build a support system.


10. What Lupus Patients Want Providers to Know: Every Patient is Unique

 

Video Length: 4:59
Three patients who have lupus describe some of the challenges they have faced in living with the disease and how important it is for practitioners to recognize how the disease affects each of their patients and that every patient is unique. Expert stresses the importance of every type of practitioner knowing about lupus.


11. What Lupus Patients Want Providers to Know: Learn by Listening

 

Video Length: 4:09
Patients explain the impact practitioners can have on their patients’ health simply by listening to their patients. Patients can provide valuable insight on their previous treatments and current symptoms; listening can build strong doctor-patient relationships and keep the lines of communication open.


Acknowledgements:

This educational resource on lupus and health disparities was developed and produced by The Lupus Initiative in partnership with the U.S. Department of Health and Human Services, Office of Minority Health, The Lupus Initiative Consortium and a host of experts in rheumatology, health disparities and lupus research – many of whom are named below. Others, not named here, and members of The Lupus Initiative Consortium (link word CONSORTIUM to http://thelupusinitiative.org/about-us/consortium/), provided feedback at every stage of development which was integral to the quality of these materials. We hope you will use and share them liberally.

Lupus Curriculum Developers and Editors:
Video Reference Library

Developers:
David Wofsy, MD
Professor of Medicine
Associate Dean for Admissions
UCSF School of Medicine

Jinoos Yazdany, MD, MPH
Assistant Professor of Medicine
UCSF School of Medicine

Maria C. Dall’Era, MD
Associate Professor of Medicine
Director, Lupus Clinic
UCSF School of Medicine

Editors:
Betty Diamond, MD
Investigator & Head, Center for Autoimmune
and Musculoskeletal Diseases
The Feinstein Institute for Medical Research

S. Sam Lim, MD, MPH
Associate Professor of Medicine
Div. of Rheumatology
Emory University School of Medicine

David Wofsy, MD
Professor of Medicine
Associate Dean for Admissions
UCSF School of Medicine