1. A single centre audit of home visit outcomes in PID patients self-infusing immunoglobulin. Emily Carne Advanced Nurse Practitioner, Immunology & Allergy University Hospital of Wales

2. Disclosure Organisational Member UKPIN Steering Committee Member Advisory Panel PID UK Website sub committee member UK Immunology & Allergy Nurse Group Advisory board participation Baxter BPL Shire Stallergenes Meeting, research and speaker support Allergy Therapeutics ALK Abello Baxter Biotest BPL CSL Behring Grifols Octapharma Clinical trials ALK Abello Baxter BPL CSL Behring Grifols GSK Novartis Octapharma

3. Home visit background 52% (92) patients infuse at home Initial training – 4-6 infusions + assessment Annual home visit for 2 years then every 2 years CNS clinic visit every 6 months Phone support as required

4. Audit Increasing pressure to reduce services ↑patient numbers ↓staff = reduced home visits* 2011 versus 2013 Method: notes from home visits collated and compared retrospectively Assess impact and outcomes of home visits * 6 monthly clinic visits continued

5. Audit results 35/92 (38%) had problem requiring retraining or discussion

6. Audit results (2) The majority of problems (24) were found when home visit was overdue When comparing time periods 78% of problems were found 2013 Additionally 33 patients required retraining due to new equipment or updated technique

7. Audit results (3) *P<0.0001 using Fishers exact two tailed p test

8. Home or clinic assessment Since 2005 annual anonymous satisfaction surveys: 67%-86% benefitted from home assessment Time – in-depth discussion in clinic not always possible Relationship of trust and longevity Known knowns/known unknowns vs unknown unknowns Circumstances change

9. Case studies R : Divorced, moved out of marital home. Environment no longer suitable N : Clinic appointment did not reveal problems, known anxiety issues. At HV clues to obsessive traits observed, lengthy discussion with patient and wife revealed significant issues with adherence

10. Conclusion Preventative intervention works Important to build HV into service development Predictive evidence for appropriate HV intervals Training drift highlights the additional need to keep patients informed of new developments Additional safety is offered by HV over and above clinic appointments

11. With thanks to patients and colleagues at the Immunodeficiency Centre for Wales Clare Kingdon Charis Joyce Dr S Jolles Dr T El-Shanawany Dr P Williams Dr M Ponsford Thank you for listening