A few months ago, Vall d'Hebron and the Barcelona Foundation for Primary Immunodeficiencies in Pediatrics (BCN-PID Foundation) launched a pilot test of a psychosocial care program for adult patients with a primary immunodeficiency in Catalonia. The project "I have PID. I'm an adult and I'm not alone" provides comprehensive care and psychological support to adult patients with primary immunodeficiency (PID) and their families. The program is now continuing with an expansion phase to provide support to patients at other centers, such as Bellvitge University Hospital, and is made possible thanks to the collaboration of the Catalan Association of Primary Immune Deficiencies (ACADIP) and the support of “la Caixa” Foundation and Grifols.
Since 2015, the Vall d'Hebron team has been promoting the program "I have a PID. I am not alone" to facilitate, both children and adolescents and their families, to face the disease in all its areas of impact. This program for children and adolescents has so far benefited 254 people (children and families) and has been the seed that has given rise to the program for adults, which so far has served 16 patients.
The project aims to improve the quality of life of those affected and empower them with an optimal level of autonomy. "Through telematic sessions, we make a therapeutic accompaniment to address the repercussions of the disease and work the reality of these people from a holistic perspective, always in favor of their emotional well-being", explains Sònia Rodríguez, general health psychologist of the Immunology Committee of the Vall d'Hebron University Hospital. These sessions can be attended by people who transition from child psychology clinics as well as directly from adult immunodeficiency clinics, in addition to their families or caregivers.
The goal of "I have PID. I'm an adult and I'm not alone" is to reach adults diagnosed with a PID attended by any center affiliated to the Catalan Health System. "This coordination with other centers is key so that as many patients as possible benefit from a program that has a positive impact on their emotional well-being", says Dr. Pere Soler, head of the Pediatric Infectious Pathology and Immunodeficiency Unit at Vall d'Hebron Hospital and head of the Infection in Immunocompromised Pediatric Patients group at Vall d'Hebron Recerca. Thus, in the coming weeks the sessions will begin with patients from the University Hospital of Bellvitge (HUB). "Some immunodeficiencies debut or progress in adulthood and this program will provide psychological support to deal with these situations," says Dr. Xavier Solanich, coordinator of the Functional Unit of Primary Immunodeficiencies of the HUB.
The advantages of "I have PID. I'm old and I'm not alone" sessions.
The program "I have PID. I'm an adult and I'm not alone" consists of telematic sessions with a health psychologist with a frequency ranging from two to four weeks, depending on the needs of each patient. These meetings provide a space for care that facilitates communication and understanding in order to face the disease. In this way, the reality of each person is evaluated and the intervention of health professionals in the family, social and work environment is agreed upon.
The biopsychosocial approach to PIDs makes it possible to achieve improvements in the quality of life of patients, with an improvement in the acceptance and coping with the diagnosis, the acquisition of greater autonomy and ease of adaptation to the disease, as well as tools to confront and help patients to be more effective in terms of decisions to be made or complications they may have. Self-esteem and control of symptoms and emotions are also increased and the appearance of mood disorders is anticipated.