ADVANCING PROVIDER ENGAGEMENT ON ASSESSING PATIENT COPING IN PERSONS DIAGNOSED WITH SCLERODERMA
Objectives:
1. To increase provider engagement to assess patient coping
2. To increase providers addressing coping during clinical visits
Introduction:
Scleroderma is a rare multisystem autoimmune disease characterized by vasculopathy
and fluctuating levels of organ fibrosis (Shah & Wigley, 2013). The psychosocial needs of the
person diagnosed with scleroderma include coping with body image disturbances, depressive
symptoms, anxiety, low self-esteem, and medical complications (Leon et al., 2014). Coping is
often not addressed during clinical encounters with persons diagnosed with scleroderma;
providers typically focus on the internal physical disease manifestations as this is priority to
sustain life (Amin et. al, 2011). Individually-tailored interventions that address both medical and
psychosocial aspects of scleroderma care are needed to provide optimum and comprehensive
care to persons diagnosed with this debilitating disease (Malcarne et al., 2013). Early detection
and treatment of psychosocial problems in scleroderma is pivotal to improved long-term
outcomes and quality of life (Leon et al., 2014).
Background
When I began seeing persons diagnosed with scleroderma a few years ago as a Nurse
Practitioner, it was evident that I was the only provider consistently asking about the
psychosocial aspect of their disease. It was important for me to know how a new mother was
holding her newborn and changing diapers with contracted fingers. How a professional was
explaining to co-workers why his face was changing when he was questioned. And how a
retired grandmother was keeping up with her grandchildren with new shortness of breath and
constant gastrointestinal reflux. As I began to ask how they coped with the many disabilities of
their disease, the response was mostly tears, not having reliable resources to help, and a decline
in quality of life. The other providers wanted to ask about coping, but they did not know how to
address coping and did not fully appreciate the significant impact that coping had on persons
diagnosed with scleroderma.
Providers revealed that they admittedly omit the psychosocial aspects of care because of
time constraints; because they do not know how to intervene, they would like some guidance
about care specific to coping with scleroderma (personal communication, 2018). Persons with
scleroderma are predisposed to high levels of distress secondary to disability and appearance
changes (Leon et. al., 2014). Medical management has not been successful in altering the
disease trajectory, the substantial morbidity, or the early mortality (Kennedy et al., 2018). Thus,
it is imperative to establish supports that facilitate effective coping.
Discussion:
A targeted engagement intervention delivered by a board certified psychiatrist and
doctoral student increased provider engagement on coping assessment and coping being
addressed during clinical visits for persons diagnosed with scleroderma. Educating a group of
scleroderma providers regarding what coping is and why it is important to address in the
scleroderma population enhanced complete care to include the psychosocial aspects of the
disease. Providing guidance for how to start the coping conversation and offering resources for
persons diagnosed with scleroderma heightened the engagement of the scleroderma providers.
Exposure to the coping engagement intervention resulted in an incremental increase (non-
significant) in the Scleroderma and Comfort with Coping Assessment scores. Likely this was
due to a ceiling effect at baseline. Existing literature confirms that persons diagnosed with
scleroderma face coping-related challenges with lack of resources and lack of provider support
for the psychosocial aspect of the disease (Milette et al., 2018). By engaging the providers, more
persons diagnosed with scleroderma had coping addressed during their clinical visit evidenced
by more charts containing the coping keywords following the session. Although the provider
sample was under-powered to show a statistical effect on the engagement from the intervention,
there was a small positive change, which suggests that providers are starting to understand the
importance of coping and that it is feasible to address during clinical visits. This also means that
more persons diagnosed with scleroderma are having their psychosocial needs met.
Limitations
When interpreting the current findings of this quality improvement project, many
limitations were identified. First, the provider sample (stakeholders) of six was not sufficient to
show statistically significant increases in knowledge, but the project was conducted at one of the
largest and most active scleroderma centers in the world with full participation and engagement
from the providers that delivered care to persons diagnosed with scleroderma. Second, the
intervention was one brief engagement session delivered in the beginning of the 12 week project
with bi-weekly reminders via in person meetings done on Fridays. Although the data did show
an increased number of charts having a coping keyword, a second and third engagement session
could have potentially promoted greater clinical significance for the population. Also, the timing
of the bi-weekly meeting reminders on Fridays were not sufficient enough to maintain a sense of
urgency for the project. Having a weekly huddle on Monday, rather than Friday, or at the
beginning of clinic sessions might have made a more significant impact. Third, while all six
providers participated in the engagement session, only 2/6 embraced the change by incorporating
the coping assessment into their clinical visits fairly regularly. One of the providers did not
document a keyword in any of their subsequent visits, and the other three providers only
documented coping a few times. It is possible that the 4/6 providers that did not document
coping during a clinical visit were not comfortable asking about it. Getting a sense of provider
comfort with coping shortly following the engagement session might have led to greater
documentation of keywords by identifying perceived barriers from the providers. Fourth, the
providers were not instructed, specifically, to document coping keywords in the chart.
Therefore, it was possible that coping was being addressed during the visit, but the
documentation of the conversation was not captured.
Strengths
The main strength of this quality improvement project is that it addressed an important
first step for the incorporation of coping to be included in the standard template for all clinical
visits for persons diagnosed with scleroderma. It also was important in that it reminded
providers of the importance of addressing the person, not the disease, and their concerns and
coping with the disfiguring aspects of scleroderma.
Stakeholder engagement and buy-in was crucial to this quality improvement project. All
six of the scleroderma providers participated in the intervention and completed the pre and post
engagement surveys. They remained engaged with increased documentation of coping over the
implementation period, although not statistically significant.
Collaboration with a board certified psychiatrist was also crucial to the project. An
interdisciplinary approach to provide care to persons diagnosed with scleroderma is ideal
because of the complicated multisystem involvement.
Future directions for research
Quality improvement projects can help identify gaps in the state of the science and
inform opportunities for research. The multisystem complications of scleroderma overshadow
the psychosocial aspect of the disease. This is unfortunate as the provider strives to provide
complete care for the person diagnosed with scleroderma. There is great need for coping
interventions for persons diagnosed with scleroderma. Longitudinal research and randomized
controlled trials are needed to assess coping interventions targeting the psychological aspect of
the disease (Arat et al., 2011; van Lankveld et al., 2007). Coping strategies, reliable
interventions, and perceived barriers to address coping are needed for providers to offer complete
care.
There is also a great need for scleroderma providers to have proper training on coping and
scleroderma. Most scleroderma providers are not prepared to effectively manage the
psychosocial aspects of the disease and miss an opportunity to improve quality of life in this
population. Future training programs that include coping for rheumatology nurses, medical
students, fellows, residents, and experienced providers is essential to improve the psychosocial
health of persons diagnosed with scleroderma. The interdisciplinary approach is ideal when all
specialists have an interest in the disease; and, when they are aware of the many clinical
manifestations and complications from scleroderma. With greater awareness of this need, there
will be better coping interventions for providers to offer to persons diagnosed with scleroderma.
Summary:
This quality improvement project engaged six providers to change the focus of their
clinical care to include coping in their assessment and not just the physical manifestations. The
first step that this project addressed was to engage the providers and to give them the resources
needed to talk about coping during clinical encounters. A better understanding of the barriers
that providers are faced with when attempting to address coping in scleroderma is essential.
Providers need to be prepared to initiate a discussion on coping and how to offer interventions to
improve quality of life for persons diagnosed with scleroderma. This project could benefit other
scleroderma centers that also only focus on the physical manifestations of the disease. To be
able to support persons diagnosed with scleroderma with proper coping resources to improve
quality of life is essential for complete care.
Regina M. Greco, CRNP, MSN, RN
Regina M. Greco earned her Bachelor of Science in Nursing from Villa Julie College, a Master of Science in Health Systems Management in Nursing and a Post-Master’s Adult/Geriatric Primary Care Nurse Practitioner Certificate both from Johns Hopkins University School of Nursing. She is currently completing her Doctor of Nursing Practice Executive Track and Post-Master’s Nurse Educator Certificate Program both from Johns Hopkins University School of Nursing. She has over 17 years of clinical experience working as a nurse in Geriatrics and Rheumatology. Her specialty focus for the last 13 years in Rheumatology is scleroderma, practicing as a Nurse Practitioner providing care for this rare population. Her research is focused on engaging providers on coping and scleroderma. She also participates in multiple research projects for scleroderma, myositis, and rheumatoid arthritis. She was recently invited to participate in an advisory board meeting regarding scleroderma related lung disease.