Results of “I have PID. I'm not alone” project during 2017

January 2018

The “I have PID. I'm not alone” project closes the year 2017 with the satisfaction of having achieved the aims and with very good results from the satisfaction surveys answered by patients, relatives and involved professionals.

It has been possible to offer comprehensive care for pediatric patients with primary immunodeficiencies (PID) and their families thanks to the support of the Obra Social La Caixa and with specific support from the Diputació de Barcelona and Ajuntament de Barcelona. The objective has been to ensure the emotional well-being and quality of life of these children who suffer a chronic illness.

Throughout 2017, we have been able to attend about 70 patients and 140 relatives accompanying them in their process of growing up with a PID, responding to very diverse and complex needs. Social improvements have been achieved during hospitalizations offering dining tickets for caregivers, transport scholarships and specific materials. We have given the "Welcome Kits" to 42 admitted patients.

A full-time psychologist has been employed and has worked in an integrated and coordinated way within the interdisciplinary team and with the two entities involved in the project; the Catalan Association of Primary Immune Deficiencies (ACADIP) and the BCN PID Foundation.

The overall assessment has been very positive and satisfactory. The results of the evaluation surveys have been excellent, highlighting the professionalism, implication and human care. The collected proposals propose to improve certain aspects of the facilities. The surveys have brought voice to patients to capture their needs and demands.