Role of nursing in the care of patient's skin with cutaneous chronic graft-versus-host disease after allogeneic haemopoietic stem cell transplantation: a questionnaire-based survey

Abstract

Background: Chronic GvHD (cGvHD) is a common long term consequence of allogeneic haemopoietic stem cell transplantation. As cutaneous chronic Graft versus Host Disease (ccGvHD) can have a profound effect on quality of life, supportive care is crucial for ccGvHD patients. We aimed to gain an understanding of current practice in ccGvHD management within EBMT member centres, including level of access to extracorporeal photophoresis (ECP) as a supportive therapy. Methods: In this cross‐sectional survey, a self‐designed online questionnaire on ccGvHD management and ECP was distributed among all nurse representatives of EBMT transplant member centres. The questionnaire included 41 questions, addressing: ccGvHD management policy, monitoring, patient education, treatments provided (with a special focus on ECP), and referral. Participation was voluntary and anonymous. The survey data were analyzed using descriptive statistics. In case of non-response on a given question in the questionnaire, the response was classified as ‘Don’t know’. Results: A total of 110 questionnaires were returned, the majority of respondents being nurses (92.7%) and having 15 or more years of relevant experience (53.6%). While most centres reported to have a policy for monitoring a possible ccGvHD patient (71.8%) and affiliation of a dermatologist for referral (59.1%), few have access to a specialist nurse (e.g., tissue viability nurse) to support the transplant department with the management of ccGvHD patients (21.8%). All respondents indicated that assessment of ccGvHD is undertaken by the physicians, sometimes a nurse is involved (39.1%). Education is routinely provided (80.9%) in the majority of the centres, delivered mostly in a combination of oral and written information by physicians (76.4%) as well as nurses (68.2%). Topical management of ccGvHD skin is not standardized in most centres (n = 58, 52.7%) and treatment is increasingly tailored with worsening severity. Most centres have ECP available for ccGvHD patients (65.5%) or can refer to another centre for ECP treatment (10.0%). ECP is primarily provided as a therapy to patients with moderate to severe ccGvHD (40.0% and 66.4%, respectively) and is not routinely used for management of patients with mild ccGvHD (8.2%). QoL and/or emotional impact is assessed by most centres (60.9%), usually by informal questioning (43.6%). Conclusions: Our findings identify little standardization in the topical management of ccGvHD, despite skin being the most commonly cited organ affected by cGvHD. Treatment is increasingly tailored with worsening severity and ECP is reported to be used for moderate to severe ccGvHD primarily. Our results indicate that additional research into appropriate treatment of ccGvHD skin is needed to establish guidelines for treatment selection.