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Engaging adolescents and young adults at risk of anaphylaxis

Speaker: Graham C Roberts

29 September 2012


Engaging adolescents and young adults at risk of anaphylaxis Graham Roberts Professor & Honorary Consultant, Paediatric Allergy and Respiratory Medicine, David Hide Asthma and Allergy Research Centre, Isle of Wight & CES & HDH, University of Southampton Faculty of Medicine September 2012


Disclosures Professor Graham Roberts, University of Southampton  Lecture fees: ALK, Novartis, GSK  Industry-sponsored grants: ALK, Thermo Fisher Scientific & Aerocrine have provided reagents for research projects  Consultancies: ALK, Allergen Therapeutics

Monies used to support research projects and team.


Engaging young people at risk of anaphylaxis  Why focus on young people?  How do young people manage their food allergy?

 Why do young people make the decisions they make?  Can we improve our management of young people?


Engaging young people at risk of anaphylaxis  Why focus on young people?  How do young people manage their food allergy?

 Why do young people make the decisions they make?  Can we improve our management of young people?


Why focus on young people?  Food allergy affects 2.3% of 11- and 15-year-old children (Pereira 2005)

 48 fatal cases of anaphylaxis (1999 to 2006) median age 21y with 26 (54%) aged 11-30 years (Pumphrey 2007)  Challenging patients  Very little literature focusing on adolescents and young adults


Engaging young people at risk of anaphylaxis  Why focus on young people?  How do young people manage their food allergy?

 Why do young people make the decisions they make?  Can we improve our management of young people?


How do young people manage their food allergy? Online survey of teenagers  513 university undergraduates, emailed 14,990  Anaphylaxis subset: 10% (10/104) always carried autoinjector  Only 40% (46/114) always avoided the allergen.

Greenhawt MJ, JACI 2009


How do young people manage their food allergy? Survey of adrenaline autoinjector use across the UK  No difference between children and teenagers  Management of allergic reactions: Allergic reaction in previous year Allergic reaction, not anaphylaxis (n=221)

Experienced anaphylaxis (n=245)

P-value

Oral antihistamine

191 (86%)

204 (83%)

0.343

Inhaled salbutamol

16 (7%)

86 (35%)

<0.001

Intramuscular adrenaline

6 (3%)

41 (17%)

<0.001

Oral prednisolone

7 (3%)

34 (14%)

<0.001

Noimark et al, CEA 2011


How do young people manage their food allergy? Survey of adrenaline autoinjector use across the UK ď&#x201A;§ No difference between children and teenagers ď&#x201A;§ Use of autoinjectors by presentation: Symptoms Loss of consciousness Difficulty swallowing Feeling of impending doom Difficulty breathing Swelling Throat tightness Dizzy Change in voice Wheeze

Number (%) using autoinjector 6 19 8 29 35 24 9 5 23

(50%) (32%) (40%) (23%) (18%) (24%) (29%) (21%) (15%)

Noimark et al, CEA 2011


Engaging young people at risk of anaphylaxis  Why focus on young people?  How do young people manage their food allergy?

 Why do young people make the decisions they make?  Can we improve our management of young people?


Why do young people make the decisions they make? Qualitative study I  Aimed to describe the lived experiences of teenagers with food allergy.  Purposive sample of 21 teenagers, aged 13-18 years  Semi-structured interviews exploring the experience of having food allergy  Analysed using phenomenology

 Key emerging theme: managing food allergy as assessment of acceptable risk and coping with associated burden Mackenzie, Dean & Roberts PAI 2009


Why do young people make the decisions they make? Qualitative study I continued Precautions depended on personal tolerance of risk.  Accept significant risk: “… there have been occasions where I’ve bought a chocolate bar…I’ve thought ‘Ooh I’ve never had that before’ and I’ve looked on the back, after I’ve taken a couple of bites, and it says hazelnuts or almonds and I think ‘Well nothing’s happened so far.’ So I take the risk.”

 Management is negotiable balancing risk and burden: “…I know that it could have nuts in it but I have to weigh it all up, think about it…I have to weigh up what’s worse; not having it or having the chance of having a reaction…. I should be a bit more careful. At the end of the day I’ve got my mobile, …….”

 Accept no risk: “It’s a bit annoying being you’re constantly asking. But it’s okay because after that I know that the meal I’m eating is ok. I’d feel happier doing that than just sitting there thinking ‘has it actually got nuts in or not?’” Mackenzie, Dean & Roberts PAI 2009


Why do young people make the decisions they make? Survey of adrenaline autoinjector use across the UK ď&#x201A;§ No difference between children and teenagers ď&#x201A;§ Reasons for not using autoinjector for anaphylaxis: Reason Thought adrenaline unnecessary

Number (%) 111 (54%)

Unsure if adrenaline was necessary

39 (19%)

Ambulance called

16 (8%)

Device not available

11 (5%)

Scarred of giving adrenaline

5 (3%)

Not trained

5 (3%)

Attended emergency department

3 (2%)

Device out of date

2 (1%)

Noimark et al, CEA 2011


Why do young people make the decisions they make? Qualitative study II  Aim: To understand how teenagers manage their food allergies and why they do things.

 Teenagers aged 11-18 years prescribed self injectable adrenaline  IgE mediated food allergy - typical history with positive skin prick test, serum specific IgE result or positive food challenge  Study questionnaire (previous validation)

 Semi-structured interviews with open questions guided by ‘themes’.  Interviews were audiotaped and transcribed

 Thematic analysis using coded data

Monks et al, CEA 2010


Why do young people make the decisions they make? Qualitative study II: Avoidance:  Food labelling is confusing P14(F11): Well I think some of it’s, like, “this product has no nuts” and then below it says “cannot guarantee that this product is nut-free”. So I find that a bit strange, because they say it hasn’t got nuts and then suddenly they say they can’t guarantee it, so it’s a bit annoying.

 Allergen avoidance situational (risk analysis) P2(M15): If it says “may contain” I just put it to one side and don’t tempt it, but sometimes I do tempt it if I’m with my mum and I’ve got my EpiPens.

Monks et al, CEA 2010


Why do young people make the decisions they make? Qualitative study II: Avoidance continued:  Avoidance more difficult away from home P10(F17): Sometimes my friends will go to, like, an Indian or a Chinese or some other foreign food place and I tend not to go along because you really don’t know what’s in the food and the Chinese use quite a lot of nuts and things and it’s better just not to go because its so much hassle, like speaking to the chefs and trying to find something you can eat.

 Peers do not understand P16(M13): it’s just one of those things which they just sort of brush aside. Maybe if they knew well this person could die or be seriously injured or whatever then they might, sort of take it a bit more seriously.

Monks et al, CEA 2010


Why do young people make the decisions they make? Qualitative study II: Do not always carry autoinjector: 

When not planning to eat P11(M15): Well if I was going to a friends and definitely not to eat anything then I wouldn’t take it, but if I was going round to someone’s house I would probably take it, or going anywhere to eat I would take it.

Others forget P6(M16): I just don’t think about taking it. Sometimes I just don’t think about my allergy, I avoid it as much as I can.

Devices difficult to carry/too big P10(F17): They’re quite big. If you want, like, a little bag just to take out or sometimes if you don’t want to take out a bag and, like, put it in your pocket they don’t fit.

Monks et al, CEA 2010


Why do young people make the decisions they make? Qualitative study II: Treating reactions 

Majority know when to use their autoinjector P8(M11): Yeah first you get a bit wheezy and…trying to breathe but can’t get enough air in; then you get swollen and if I did have all that I’d know it was time to have my EpiPen.

But some may not use it appropriately P12(M13): Usually, like, runny nose, puffed face, difficulty breathing and my tongue swells up and I also sometimes have a bad stomach. HM: If you get those symptoms what do you do? P12(M13): I usually just take my inhaler and maybe a bit of an extra tablet, and if that didn’t help then my EpiPen.

Some teenagers are needle-phobic P6(M16): I know how to use it but I wouldn’t do it. I would do it if I needed to, but before I’d do it I’d get someone else to do it like my mum…I had a blood test and I fainted; I don’t like needles.

Monks et al, CEA 2010


Engaging young people at risk of anaphylaxis  Why focus on young people?  How do young people manage their food allergy?

 Why do young people make the decisions they make?  Can we improve our management of young people?


Can we improve our management of young people? Engage young people: Challenge

Solution(?)

Parent(s) dominating consultation with doctor. Teenagers dependent on parents involvement.

Ensure adolescent is an active participant. Use appropriate language. Be empathic, respectful, and non-judgmental. Slowly transition from parents.

Young person not interested or does not attend clinic (especially when transition to adult clinic).

Take a patient rather than a diseased centred approach. Need to empower teenager to take ownership of their allergies.

Maintaining confidentiality.

See young person on their own initially.

Not wanting to be seen in a â&#x20AC;&#x153;baby clinicâ&#x20AC;?.

See away from screaming babies


Can we improve our management of young people? Tacking food allergy specific issues: Challenge

Solution(?)

Incorrect risk assessment

Education – previous education likely to have been directed toward parents. Educate peers to minimise peer pressure.

Failure to correctly manage a reaction

Education – may not have experienced a reaction. Role play a reaction scenario. Utilise older teenagers with food allergy to delivered education. “Demonstration” challenge so teenager know what a reaction is like.

Failure to use an autoinjector

Practice with a dummy or with an out of date autoinjector on a piece of fruit. Practice giving themselves an autoinjector?


Can we improve our management of young people?  Service evaluation of the new adolescent clinic  All adolescents and most parents (90%) rated the adolescent clinic as same or better than a usual one. Adolescents

Parents 5%

24%

52%

5% 30%

40% 24%

20%

Much Better Better The Same Worse Much Worse

 Majority (63%) of adolescents preferred being seen alone for part of their consultation.  Majority (89%) of parents commented positively on inclusion of adolescent in consultation and in particular the way their child was seen independently.


Engaging young people at risk of anaphylaxis  See young person on their own (initially) in an adolescent clinic  Take a young person not a disease centred approach  Ensure that the young person is an active participant in the consultation  Education directed at young person (and their peers)  Utilise peer support group  Role play managing a reaction  Practice with autoinjector  Use a written management plan


Acknowledgements  EAACI Pediatric Anaphylaxis Taskforce  Hazal Gowland  Hannah Monks  Heather MacKenzie, Tara Dean & David Hide Asthma & Allergy Research Centre  Rosie King, Lindsey Brown, Di Keeton, Mich Lajeunesse, Jane Lucas  Lee Noimark and the UK paediatric allergy clinics  Donald Payne  All our patients and their families

Graham C Roberts  
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