The lupus app will help patients better manage their disease by sending alerts regarding appointments and medication refills; providing education on drug interactions; providing nutrition and exercise tips; notifying them about new medications; and offering resources to cope with the emotional and psychological issues related to lupus. The app could also help patients track symptoms by having the ability to photograph a rash and send it to a physician, for example.
You Might Also Like
Explore This IssueApril 2017
Also By This Author
A second series of focus groups will be to ask SLE patients to identify important outcomes, and what barriers exist to achieving them and what enablers help to achieve them, as well as patients’ views of how healthcare providers can facilitate achievement of these outcomes.
Lupus’ Effect on Pregnancy
Another research effort focuses on pregnant women who have lupus. These women have higher rates of preeclampsia, fetal and neonatal death and fetal growth restriction. “Only a subset of lupus pregnancies end poorly, but identifying women destined for these complications remains challenging and limits our ability to counsel and care for pregnant lupus patients,” says Dr. Salmon, who led a prospective multicenter observational study, called the PROMISSE study, to identify markers that predict poor pregnancy outcome in APS and/or SLE patients.2
“We identified a panel of clinical and laboratory variables that, in the first months, can be used to anticipate outcomes of pregnancy. In addition, we identified pathways of injury to the placenta and developing fetus that provide new targets for prevention and treatment,” Dr. Salmon says.2 “Explaining to patients that fewer than 20% of pregnancies in patients with SLE or APL end with adverse outcomes, and that in the absence of specific markers, complication rates are similar to those in healthy women, helps ease their concerns.3
“And for those women with SLE who have the highest risk for preeclampsia and severe complications, we are embarking upon an interventional clinical trial with a biologic therapy to prevent these outcomes,” Dr. Salmon continues.
PROMISSE research coordinators are an important source of support to pregnant patients with lupus. They not only meet the patients at HSS during their rheumatology appointments, but they also attend monthly obstetric appointments, allowing them to develop partnerships for advocacy and support.
“Social workers collaborate closely with our research coordinators and often serve as a touch point to explore concerns in greater depth and to refer patients for peer support to other lupus patients who have gone through similar experiences,” Dr. Salmon says.4
- Levine AB, Batterman A, Bykerk V, et al. Patient preferences for the development of a mobile health (mHealth) application (App) for systemic lupus erythematosus (SLE) patients: A qualitative study [abstract]. Arthritis Rheumatol. 2015;67(suppl 10).
- Kim YM, Buyon JP, Guerra MM, et al. Angiogenic factor imbalance early in pregnancy predicts adverse outcomes in patients with lupus and antiphospholipid antibodies: Results of the PROMISSE study. Am J Obstet Gynecol. 2016 Jan;214(1):108.e1–108.e14. doi:10.1016/j.ajog.2015.09.066. Epub 2015 Sep 29.
- Buyon JP, Kim YM, Guerra MM, et al. Predictors of pregnancy outcome in a prospective, multiethnic cohort of lupus patients. Ann Intern Med. 2015 Aug 4;163(3):153–163.
- Kim S, Persad P, Erka D, et al. Research studies and their implication for social work practice in a multidisciplinary center for lupus care. Soc Work Health Care. 2015;51(7). doi: 10.1080/00981389.2012.683711
Editor’s note: ACR Resources
The ACR’s Lupus Initiative offers a wide range of resources for providers, patients, educators and students.