Education of patients with primary hypogammaglobulinemia for S/C Ig self-administration The Saint-Louis Hospital (Paris) Experience R. Laumond, J. Baron Lysio, M-L Doizé

Aims of the approach  Allowing for autonomy of patients at home  Reducing the costs for the health system  Modifying the use of out-patient hospital

The educational booklet

Evaluation scale Hygiene and installation Week 1, 2, … Technical care Hand washing, Asepsis Waste Peremption of products … Date, and validation: -Demonstration -Made « alone or with » -Acquired

Inclusion  S/C administration of Ig is a medical decision  Eligibility Criteria :  Voluntary contribution  Cognitive capacity  Subjective assessment of skilfulness  Rule approval

Training period  3 steps for each patient Demonstration (showing & handling by a nurse) Made « with » (handling with a nurse) Made « alone » (validated by a nurse)  The step made « alone » can be carried on for several weeks until autonomy is reached

Practical course

 Hand washing  Work surface organization  Syringe manipulation

 Programming and connecting the ambulatory infusion pump  Draining the tubulure after adjusting it on the syringe

 Decontamination of the cutaneous surface  Installation and occupation of the patient during infusion as wished  Subcutaneous injection Made alone

Following at home  Control session planned 3 months later in out-patient hospitalisation  Thereafter, hospitalisation or consultation every 6 months  Call center for questions or emergency

Quantitative Results 48/58 substituted patients included 159 out-patient sessions (Median = 3 per patient) 1 failure (patient decision) Few side effects (only local reactions) Treatment could be resumed in all patients

Qualitative results Most patients (95%) were satisfied with Ig s/c administration : –More comfortable and painless than Ig IV –Less time consuming –Satisfied with the process

Conclusion