IMPROVING OUTCOMES FOR PATIENTS WITH PSORIATIC DISEASE BY SUPPORTING NURSES: EDUCATION AND RESOURCES AVAILABLE THROUGH THE NATIONAL PSORIASIS FOUNDATION
On July 1, 2019, the National Psoriasis Foundation (NPF) launched a new strategic plan intended to challenge the organization to achieve bigger and more ambitious goals than ever before, on behalf of the psoriatic disease community (Figure 1). As a task force of 16 patients, caregivers, clinicians, researchers, consultants, (former) industry executive, and board members joined senior NPF staff to design this plan; the singular focus was on identifying the goals that must be achieved as a community to have a significant impact on the health of all individuals living with psoriasis and psoriatic arthritis.
Embedded in this effort was an appreciation that this could not be a plan executed by the NPF alone. Rather, to achieve the results the community deserves, the organization recognized a plan must be put forward—and hopefully accomplished—in partnership with other members of the healthcare community who have a connection to psoriatic disease. In fact, in concluding a 2019 commentary entitled “National Psoriasis Foundation: Planning for a Future Free of Psoriatic Disease and Its Burdens” on the development of this strategic plan in the Journal of Psoriasis and Psoriatic Arthritis, NPF team authors noted, “The NPF cannot succeed on this plan if acting alone. Now the real work begins for the NPF staff, volunteers, partners, researchers, clinicians, patients, caregivers, and all who make up the psoriatic disease community. That's why collaborations, partnerships, and coalition efforts are embedded throughout this plan. The aim is that together, the psoriatic disease community can move that much closer to our goals” (Howard et al., 2019).
Now in the second year of this strategic plan, the NPF is engaged with multiple healthcare sectors to advance the care of the psoriatic disease community. Whether through research endeavors, educational programs, community supports, or networking opportunities, the NPF and partners are finding ways to engage with one another and with patients and caregivers to meet members of the community where they are in their journey with psoriatic disease and march with them on the path to better health.
NURSES PLAY A CRITICAL ROLE IN CARING FOR THE PSORIATIC DISEASE COMMUNITY
As the leading patient advocacy organization serving the psoriatic disease community, the NPF regularly surveys patients with psoriatic disease and the array of healthcare providers who treat them to understand their lived experience, quality of life, emerging trends, and unmet needs. Results from these surveys underscore the critical role nurses play in caring for patients with psoriatic disease and the evolving role of nurses in helping patients access novel treatments for psoriatic disease.
Of the 1,570 participants to the 2019 NPF Annual Survey, nearly 4% see a nurse practitioner (2.4%) or general physician assistant (1.3%) as their primary healthcare provider treating their disease (Figure 2; Gondo & Bell, 2019).
Furthermore, when asked about all healthcare providers currently seen for treatment related to their psoriasis/psoriatic arthritis, 20.9% included nurse practitioners or physician's assistants. Patients with psoriatic disease are, therefore, receiving significant care from nurses working independently and in partnership with specialists and primary care providers as part of their care team (Figure 3).
The Affordable Care Act and similar public policy efforts in the last decade had the goal of increasing the number of individuals covered by health insurance in the United States (Assistant Secretary for Public Affairs, 2021). Among those remaining uninsured, nurses play an important role. According to the same 2019 NPF Annual Survey, more than 50% of uninsured patients are receiving their care from someone other than a specialist (Gondo & Bell, 2019). These patients, along with patients in Medicare, report the highest rates (24.1% and 25.1%, respectively) of monthly out-of-pocket costs in excess of $200. Understanding how to work within the particular challenges faced by patients without health insurance and for whom out-of-pocket costs may be a significant barrier is of critical importance to these practitioners (Figure 4).
NPF COMPLEMENTS NURSING CARE THROUGH PATIENT-FOCUSED PROGRAMMING
Since the late 1960s when Beverly Foster brought together a group of individuals in Oregon living with psoriasis for a series of discussions with leading researchers, connecting patients to care providers and to one another has been a central focus of the NPF. In the more than 50 years since, the NPF has never lost sight of the importance of patient-focused programming. These initiatives have included large conferences (including the NPF Community Conferences held virtually in October, March, and April with over 500 combined patients and caregiver registrants) to on-demand educational programming (including webinars and dozens of podcasts), to one-on-one offerings including a mentor program and an online community platform. These programs are always offered for free, contain content approved by medical professionals, and feature leading experts in psoriatic disease. Creating initiatives and resources that complement the care our community receives from healthcare professionals has been a pillar of the support that the Foundation has provided the community.
The importance of this support and the collaboration between patients and providers was highlighted in the psoriasis guidelines issued by the American Academy of Dermatology and NPF. In the “Joint AAD-NPF Guidelines of Care for the Management and Treatment of Psoriasis with Awareness and Attention to Comorbidities,” the committee noted “[p]atient education and directly involving patients in their care via shared decision making is important.” The same guideline goes on to state, “[c]reating a therapeutic alliance with patients empowers them and might enhance their satisfaction and compliance. Educational tools include verbal discussion, pamphlets, and trusted internet resources” (Elmets et al., 2019). This is what nurses and their patients can count on receiving from the NPF.
EDUCATIONAL OFFERINGS FOR HEALTHCARE PROFESSIONALS
Just as the NPF supports patients through educational programs and resources, the organization also offers programs for healthcare professionals. Offerings include webinars and podcasts relating to a variety of topics of interest to providers caring for those with psoriatic disease. Live and virtual programs include information about treatment plans, treatment guidelines, and understanding the immune-mediated systemic nature of the disease and the importance of managing the psoriatic disease as such. In 2018, the NPF initiated the Advanced Practice Provider Psoriasis Recognition Program, an educational program specifically focused on considerations of nurse practitioners, physician assistants, and nurses. In addition to educational programs, the NPF offers materials for providers to share with their patients to empower partnership in care. These programs are often conducted in partnership with other organizations such as the Nurse Practitioner Associates Continuing Education, Society of Dermatology Physician Assistants, or the Rheumatology Nurses Society.
COLLABORATIONS WITH HEALTHCARE PROFESSIONALS
The NPF encourages collaboration not only between patients and providers but also between healthcare professionals. Psoriasis is a lifelong systemic disease that is associated with a number of comorbid conditions and therefore requires holistic care and a collaborative healthcare team. About one third of individuals with psoriasis will develop psoriatic arthritis (Mease et al., 2013). If not treated early and properly, these individuals may experience permanent joint damage. The NPF offers programs to foster collaboration between dermatologists and rheumatologists. In addition, the NPF promotes the treatment guidelines so there is proper screening and awareness for all providers. Finally, the NPF includes providers at all stages of training and of multiple disciplines to build strong partnerships within practices and departments.
LEADING COLLABORATIVE, TRANSFORMATIONAL RESEARCH
Another major pillar of the NPF mission is research. Not only has the NPF funded over $24 million of research in recent years, but the NPF team actively conducts patient-centered, clinical, and care-based research to support our community. These efforts not only focus on a variety of aspects of care as noted with the Annual Survey but also strive to ensure diversity, equity, and inclusion for providers and patients.
JOIN WITH THE NPF
Regrettably, despite the many treatment options for individuals with all levels of psoriatic disease severity, many individuals living with psoriatic disease experience considerable barriers to care. For example, looking across patients of all insurance types, more than 30% of individuals indicated that they experienced strain because of the cost of their biologic (Gondo & Bell, 2019). The NPF's advocacy and government relations team, working in partnership with other healthcare stakeholders, is actively working to address these barriers through policy change. In the meantime, partnership and collaboration between the NPF and patients, caregivers, and healthcare providers—including nurses, payers, employers, and other stakeholders—has the potential to improve understanding of psoriatic disease by both providers and patients, improve treatment utilization and adherence, and ultimately result in improved patient health outcomes.
Assistant Secretary for Public Affairs. (2021). About the Affordable Care Act. https://www.hhs.gov/healthcare/about-the-aca/index.html
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