1. Inspired by children Faculty Disclosure No, nothing to disclose xYes, please specify: Company Name Honoraria/ Expenses Consulting/ Advisory Board Funded Research Royalties/ Patent Stock Options Ownership/ Equity Position Employee Other (please specify) CSL Behringx OctapharmaX Grifolsx

2. Inspired by children PID patients’ perspectives of the transition process by Cathryn Benson & Barbara Boardman

3. Inspired by children Definition Transition is the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child- centred to adult-orientated health care systems” (Blum et al, 1993) Need for transition recognised by many professional associations and patient groups (RCN, DoH, RCP etc) Some disciplines more established than others: diabetes, cystic fibrosis, epilepsy PID patients need good transition like anyone else. No specific current literature to direct best practice (Tuchman et al, 2008)

4. Inspired by children Background A formal transition process is thought to be important for patients, particularly those with complex medical conditions such as PID. Most guidelines have been developed by health care professionals. This study investigated the views of PID patients regarding transition at the tertiary immunology centres in the North West of England.

5. Inspired by children Methods 36 children and adults who had or were about to go through the transition process were asked to fill out standardised questionnaires

6. Inspired by children Cohort 36 participants from 3 North West Cities (Liverpool, Manchester & Preston) 15 children aged 11 – 16 years (80% male) 21 adults aged 17 – 28 years (57% male) broad spread of patients with differing PID diagnosis SCID post BMT, CVID, XLA, complement, ALPS, IPEX

7. Inspired by children Timing of transition 71% wanted the process to start at 14 – 15 y. o. 94% wanted to transit to adults at 16 – 18 y. o. 96% of adults had been transitioned at this age

8. Inspired by children 81% wanted a formal summary 67% wanted a personal copy of the summary 25% felt that a transfer letter was sufficient (post-BMT, agamma, other) 92% felt it was important to understand their disease Information transfer

9. Inspired by children 61% wanted to be seen without parents at 14 – 16 y. o 61% felt it was important for parents to attend first appointment in adult clinic 39% wanted to be seen without parents at 12 – 13 y. o. Parental involvement

10. Inspired by children Clinician involvement 14% wanted paediatrician at first adult appointment 58% wanted adult clinician at paediatric transition appointment 67% wanted to visit adult centre prior to transfer 90% felt it was important to have named contact in adult centre

11. Inspired by children Differences of opinions? There were no significant differences in the opinions of the children and the adults in the cohort Females were more likely to feel that a transfer letter was sufficient (50% vs 12% for males) p < 0.05 Males were more likely to want their parent at the first appointment in the adult clinic (71% vs 33% for females) p < 0.05

12. Inspired by children Conclusions 81% felt that a formal transition process was very useful /essential aim for transition between 16 – 18 y. o. ensure the patient understands their disease and has a formal summary need to be seen without parents varies – ask the patient adult contact and active involvement is important boys need more support at first adult appointment than girls

13. Inspired by children The Future extend study acknowledge differences, individual and gender preferences in the transition process develop transition pathway based on patient and clinical needs actively engage with adult team

14. Inspired by children Thank you