Researchers Develop Psychosocial Care Model for Patients With Hemophilia Undergoing Gene Therapy
A psychosocial care model was developed for patients with hemophilia who require novel therapies such as gene therapy. This care model was presented in a letter to the editor of Haemophilia.
Recently, there has been an increasing number of novel therapies having received approval for treating hemophilia, including gene therapy. While treatment breakthroughs such as these are a healthy sign of therapeutic development advancements, studies suggest that patients undergoing gene therapy for hemophilia lack adequate psychosocial support.
Researchers developed a model they hope serves to identify comprehensive care strategies for patients with hemophilia. Specifically, this model focused on meeting the psychosocial therapies of patients undergoing gene therapy or other novel therapies and their families.
The research team developed the Framework of Psychosocial Support and Novel Therapies, which was presented in February 2024 at the European Psychosocial Roundtable. Through interaction with participants (n=49), including patients, healthcare workers, and researchers, the research team collected feedback regarding the framework they developed.
The framework is visually shaped like a 3-tiered pyramid. The tip of the pyramid encompassed clinical treatments, specifically those of a psychosocial nature. The middle portion consisted of intermediate support and counseling, which entailed individual or group support from individuals such as coaches, peers, and social workers. The bottom layer of the pyramid encompassed information and psychosocial education, which was primarily focused on preventing negative psychological or social issues.
“
It is important to acknowledge the broader ecosystem of support needed for successful implementation, as well as differences of resources between countries.
The roundtable yielded various feedback regarding the problems most often faced by healthcare professionals in providing adequate psychosocial support. For example, participants articulated that healthcare professionals may experience significant stress and doubt with the efficacy and safety of treatment. This sense of stress is augmented by the responsibility of managing expectations and preparing for unforeseen complications. Hence, healthcare providers themselves may benefit from dedicated support systems.
“While the model’s primary focus is on the patient journey and the therapy’s impact on their physical, psychological, and psychosocial well-being, it is important to acknowledge the broader ecosystem of support needed for successful implementation, as well as differences of resources between countries,” the study authors wrote in their report.
Following this feedback-gathering exercise, the study authors plan to acquire input from the community regarding aspects of psychosocial care that matter most to them during different phases of gene therapy. In addition, the research team will seek to better identify how psychosocial care can be administered by the right healthcare professional. Ultimately, the hope is that research on this topic will become the foundation for the European Psychosocial Principles for Gene Therapy.
link
