Inspired by children

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Inspired by children

PID patients’ perspectives of the transition process

byCathryn Benson & Barbara Boardman

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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)

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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.

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Methods

36 children and adults who had or were about to go through the transition process

were asked to fill out standardised questionnaires

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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 diagnosisSCID post BMT, CVID, XLA, complement, ALPS, IPEX

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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

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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

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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

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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 transfer90% felt it was important to have named contact in adult centre

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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

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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

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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

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Thank you