Developing Evidence-Based Guidelines for Optimal Patient Communication Prior and Post Allogeneic Stem Cell Transplantation

Allogeneic stem cell transplantation (alloSCT) is one of the most complex medical interventions. It requires long-term adherence to medication and follow up care, necessitating effective patient-centered communication. However, physician-patient-communication frequently fails on multiple layers. To gain insights into the perceived communication needs of patients with chronic Graft-versus-Host Disease (cGvHD), we performed a community advisory board (CAB) with 12 European patients, which revealed major communication gaps. The CAB included 12 patient advocates, 9 of whom had personally undergone alloSCT and developed cGvHD. The results of the CAB were complemented by three studies where we interviewed 72 German patients in total. Twenty patients were interviewed prior to alloSCT and 52 at a median of 2.7 years (range: 1.2-5) after alloSCT. The results were subsequently discussed within an international symposium involving 35 healthcare providers and researchers from various disciplines, including physicians, psychologists, communication scientists, physiotherapists and nurses, as well as patient advocates. The symposium aimed to align the findings with joint guidance on short- and long-term goals to improve patient communication related to alloSCT. Several areas of need were identified. Patients perceive informed consent processes as overwhelming, leading to a lack of recall, which increases over time and impairs the ability to participate in shared decision making. Intercultural mismatches (e. g., related to language barriers or misconceptions regarding roles and responsibilities in communication) commonly contribute to the feeling of being overwhelmed and remain challenging for physicians, patients and their support persons. Patients frequently report a lack of knowledge of the early symptoms of cGvHD and other late effects often leading to delayed diagnosis. The need for dynamic patient information throughout the transplant course was repeatedly emphasized, including a lack of information on tapering hygiene restrictions and occupational rehabilitation. Psychosocial symptom load (e. g., psychological distress, cognitive impairment, challenges with adherence) is frequently neither recognized nor addressed by the healthcare team. This is in part due to the discordance between patients and physicians in terms of who is considered responsible for bringing-up symptoms and concerns. There is confusion as to what falls into the physicians' responsibility vs. the patients' responsibility. Physicians are often unsure how best to identify patients' needs, and many patients are reluctant to raise issues unrelated to physical symptoms or issues often considered as taboos, such as sexual health. At the organizational level, patients report a lack of intersectional communication between healthcare providers and an urgent need for reliable low-barrier access to transplant centers. The availability of an accessible healthcare provider (e. g., nurse) as a central point of contact and a back-up source to address physician-patient communication gaps was emphasized. Moreover, the context of outpatient counselling, involving limited time to focus on individual patients' needs, rotating staff and a lack of feedback systems (e.g., patient satisfaction surveys), contributes to perceived communication gaps. An additional area of information needs arises from the lack of expertise of non-transplantation healthcare providers in transplant-specific complications, which commonly leads to conflicting diagnoses and increases in patient distress. To address the identified communication gaps, which interfere with effective medical management, impair quality of life and delay patient recovery, a NIH taskforce was created. The taskforce aims to discuss and further develop short- and long-term interventions designed to help deliver optimal care prior and post alloSCT. Strategies include improved patient information, supporting shared decision making and self-management of symptoms. A more active discussion of frequently ignored topic areas could be achieved by implementing patient question prompt lists, as well as physician checklists for patient needs and understanding. In addition, further training on optimal patient-centered care could help improve communication with patients and support persons, as well as within the multidisciplinary team.