The aim of this study is to determine whether an intensive care management program for
high-risk lupus patients (Rheum-iCMP, modeled after the highly successful BWH iCMP for
primary care patients) reduces acute care utilization (emergency department (ED) visits,
hospitalizations), improves rheumatology clinic appointment attendance, and ultimately
improves quality of lupus care in this group. Selected iCMP nurses will receive a 4-hour
training using unique educational materials already developed by our team that specifically
address lupus-related racial, ethnic and socioeconomic disparities, as well as clinical
information about lupus.
The investigators plan to identify high-risk lupus patients in the Partners' risk contract
(Medicaid, Medicare and certain commercial insurances) with BWH primary care physicians
(PCPs) from three sources. First, the investigators will use the BWH Lupus Registry, which is
updated regularly and includes lupus patients actively receiving care at BWH. Second, the
investigators will identify lupus patients via Partners electronic medical record (EMR) using
our validated lupus algorithm and look specifically at those receiving primary care within
the BWH system. The investigators will link both BWH Lupus Registry patients and patients
meeting our algorithm to claims data through the Population Health Repository. The
investigators will then identify patients with increased healthcare utilization, including ED
visits and/or hospitalizations during the preceding 3 years, and who are at risk for
avoidable outcomes (rheumatology appointment no-shows/same-day cancellations within the same
period). The investigators will also apply the Partners' Center for Population Health
high-risk algorithm to both cohorts to identify additional high-risk patients. The
investigators will then reach out to the identified patients' PCPs or their rheumatologists
for approval to send a study invitation to patients or asking physicians to introduce the
study to their patients with a fact sheet. Third, the investigators will ask rheumatologists
to refer lupus patients who might benefit from Rheum-iCMP, since a similar referral system
has been successful within BWH-wide iCMP.
The investigators plan to newly enroll 40 lupus patients aged ≥18 years old, both male and
female, English-speaking, and who receive their primary care at BWH prospectively using a
stepped wedge design starting first with 20 patients enrolled in Rheum-iCMP, and then with 20
additional patients enrolled 4 months later. For the second 20 patients, for the first 4
months, patients will receive educational material about lupus on a monthly basis. The
investigators will invite these 40 patients to also participate in a semi-structured
interview that includes asking participants ahead of time to take 10-15 photographs (with a
disposable camera the investigators will provide) of their neighborhoods and homes, in order
to begin a conversation about the social determinants that contribute to their care-seeking
behaviors. Participants will then sit with a moderator for a ~60-90 minute semi-structured,
in-depth photo-elicitation interview. Participants will be asked to 1) select the photographs
for discussion, 2) contextualize each image and tell a story, 3) describe what is really
happening and how it relates to their life and 4) propose suggestions for what can be done to
improve any barriers described. The elicitation interviews will be audio-recorded,
transcribed verbatim, and entered into Dedoose for analysis. Participation in the
photographs/interview is not a requirement of being a part of Rheum-iCMP.
In addition to these 40 newly enrolled patients, the investigators expect that 70 additional
adult lupus patients within the Partners system are already enrolled in BWH iCMP. Among these
patients, the investigators plan to examine EMR and claims data pre and post additional
lupus-specific iCMP nurse education. However, the investigators do not plan to ask for survey
completion for this population since this iCMP program is considered standard of care and
these patients are already a part of it. Because the investigators do not feel that this will
involve more than minimal risk and because it would not be feasible, the investigators do not
plan to consent these individuals to allow us to examine their medical records.
The investigators will compare lupus-related quality metrics, rheumatology appointment
attendance, and acute care use 12 months after enrollment in rheum-iCMP as compared to 12
months before enrollment in rheum-iCMP. The investigators will collect surveys at 12 months
after enrollment in rheum-iCMP. The investigators will also examine EMR and claims data when
available prior to the rheum-iCMP and then for the subsequent 12-24 months during and
following rheum-iCMP. For the lupus patients who are already enrolled in BWH iCMP, the
investigators will compare measures extractable from EMRs and claims pre-iCMP, during iCMP
but pre-lupus-specific iCMP nurse training, and during Rheum-iCMP (post- nurse training) for
N=70.
During the intervention period, our project coordinator will set up a sustainable EPIC system
for tracking appointment no-shows and SLE quality metrics (e.g. lab monitoring, contraceptive
use). The investigators will collect the following surveys: medication adherence and
medication beliefs using the MASRI survey and the Beliefs about Medications scale, lupus
disease activity using SLAQ and SLEDAI, mental health using the MHI-5, social determinants of
health using the Partners Healthcare Social Determinants of Health (SDH) Survey, global
health assessment using the PROMIS global health scale short form, and racial discrimination
using the Everyday Discrimination Scale. The investigators will also collect baseline
demographics information via a demographics survey. The investigators will determine acute
care utilization (e.g. ED visits, hospitalizations) using partners risk contract claims data.
The investigators will also use surveys at 12 months after rheum-iCMP enrollment to assess
patient, iCMP nurse, and MD satisfaction. Surveys will be collected at outpatient
appointments or via mail. For longer term quality metrics 12-24 months past the intervention
period, the investigators will work with the Center for Population Health's team to set up a
tracking system that has Partners-wide claims data linked with EMRs. For the 70 patients
already enrolled in the iCMP intervention, the investigators will collect data on process
measures (e.g. rheumatology appointment no-shows, acute care utilization, receipt of
standard-of-care SLE monitoring laboratory tests, vaccinations, preventive care screenings
and medications). The investigators will also collect these data for the 40 newly enrolled
patients.
This is a pilot study. One of our primary measures is to reduce ambulatory rheumatology care
no-show rates for the highest risk patients. The investigators estimate that the no-show rate
is about 70% and the aim of this study is to reduce this rate to 20%. The investigators would
need a total of 40 patients (20 in each arm) to have 80% power to detect this difference,
which is why the target enrollment for new patients in Rheum-iCMP is 40.
