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APPs can serve as ‘advocate, coordinator’ for patients with chronic GVHD
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Chronic graft-versus-host disease can be a debilitating and even life-threatening complication of allogeneic hematopoietic stem cell transplantation.
Approximately 30% to 40% of patients will develop moderate-to-severe chronic GVHD per NIH consensus criteria in the first 2 years following transplant. The organ systems most commonly affected by chronic GVHD include the skin, mouth, eyes, gut and liver.
Skin manifestations are variable and can include lichen planus-like rash, poikiloderma, morphea-like superficial sclerosis and deep sclerosis resembling scleroderma. Oral GVHD primarily manifests as lichen planus with Wickham striae visible on the buccal mucosa and tongue. Ocular sicca is diagnostic of ocular GVHD. Gastrointestinal features diagnostic of chronic GVHD include esophageal webs or stricture. Liver function elevations can resemble acute hepatitis or progressive cholestasis.
Successful treatment of chronic GVHD requires prompt identification of symptoms. However, because symptoms can be of insidious onset, diagnosis and the start of appropriate therapy often are delayed.
A multidisciplinary effort
Given the spectrum of potential manifestations, treatment of established chronic GVHD often requires a multidisciplinary effort headed by the transplant team.
Since joining my institution’s stem cell transplant program over 2 years ago, my main clinical focus as an APP has been to work closely with the transplant physicians in the management of patients with established or suspected chronic GVHD. Most frequently, these patients have been referred by another transplant APP or attending physician for management of more complicated chronic GVHD presentations. I also have met patients through my role in our survivorship clinic and continued to follow them with the primary transplant team.
I reserve 2 clinic days per week for the evaluation of patients with new or established chronic GVHD. Given the complexity of many of these cases, all GVHD evaluations are allowed a 1-hour clinic visit.
During a new patient visit, I aim to confirm the diagnosis of suspected GVHD based on clinical features, stage and grade as per NIH consensus criteria, and devise a treatment plan taking into consideration the patient’s past treatment history and comorbidities, as well as their assigned NIH grading. Proper grading is useful in helping establish a treatment plan as NIH-mild GVHD can often be treated with topical therapies, whereas NIH-moderate and -severe GVHD typically require systemic therapy. I also review the patient’s history with focus on prior acute GVHD and any associated treatment, past or ongoing. I then go through a detailed chronic GVHD review of systems. After completing the physical exam, I discuss my findings and formulate a preliminary plan with the patient, making certain to discuss potential clinical trials.
Quite frequently, the plan includes coordinating appointments for additional diagnostic studies and referrals to other subspecialists to assist in chronic GVHD management. At my institution, we are fortunate to have access to providers from pulmonary medicine, dermatology, nephrology, oral medicine and ophthalmology, among others, all of whom are experienced in the management of complications of allogeneic HSCT.
After the clinic visit, I discuss the plan with the patient’s transplant attending physician and with my primary supervising physician, who serves as the chronic GVHD clinic attending physician. Clinic visits for established patients typically alternate between me and the patient’s attending transplant physician. Other times care is transitioned to me and the chronic GVHD attending physician.
When patients are referred to other subspecialists, we communicate frequently by messaging in the medical record or by phone. In the case of patients undergoing extracorporeal photopheresis for cutaneous GVHD, I often can see them with the dermatology team in the photopheresis clinic.
‘Unique role’ of APPs
Because chronic GVHD and its associated complications typically are not a main focus in the pretransplant and early post-transplant periods, patients have very little understanding when presented with this diagnosis.
Educating patients about chronic GVHD is a priority of each clinic visit. The chronic GVHD follow-up also is an ideal time to review survivorship concerns.
Frequent follow-up visits, often every 1 to 2 weeks at outset of diagnosis, afford me the opportunity to connect with patients and establish myself as an integral part of their care team — not only as a provider directly involved in medical management, but also as an advocate and coordinator, connecting them with appropriate providers in other medical disciplines and working openly with them to help provide the most comprehensive care.
As an APP, I am afforded a degree of availability and flexibility that physicians often do not have. Although the majority of my chronic GVHD clinic is a model of independent practice, I am respectful of the need to communicate any significant changes in symptoms or treatment regimen, and an attending co-signature is required on all my documentation. Frequent communication affords me the insight of the attending physician and fosters detailed discussions that ultimately help to enhance patient care.
The unique role I have within my institution’s stem cell transplant program is one I hope to continue to cultivate, with the ultimate goal of providing patients with comprehensive care and to educate and empower them through this most challenging complication.
Reference:
Flowers ME and Martin PJ. Blood. 2015;doi:10.1182/blood-2014-08-551994.
For more information:
Linda M. Perry, MS, PA-C, is a physician assistant in the Allogeneic Stem Cell Transplant Program of Hospital of the University of Pennsylvania and Abramson Cancer Center. She can be reached at Perelman Center for Advanced Medicine, 4th Floor, West Pavilion, 3400 Civic Center Blvd., Philadelphia, PA 19104; email: linda.perry@pennmedicine.upenn.edu.
Disclosure: Perry reports speakers bureau roles with AbbVie and Incyte.