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An iPad App for Children born unable to swallowCatrina Graffin

Chew is an iPad app for children born unable to swallow

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Its aim is to raise awareness

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Tracheo Oesophageal Fistula and Oesophageal Atresia

My Son

On the conditions Tracheo Oesophageal Fistula and Oesophageal Atresia. A condition my son was born with.

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Rare congenital conditions

So what is it? Tracheo Oesophageal Fistula and Oesophageal Atresia are rare congenital conditions

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Rare congenital conditions

Oesophagus food pipe Trachea airway

of the oesophagus and trachea. It affects 1 in every 3500 births worldwide.

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Rare congenital conditions

Oesophagus food pipe Trachea airway

This 1st picture shows a child with a normal oesophagus that connects to the stomach.

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Rare congenital conditions

Oesophagus food pipe Trachea airway

Common problems swallowing, digesting food, reflux, respiratory problems and additional surgery

In the 2nd picture you can see that the bottom of the oesophagus is joined to the trachea /airway. At the top we can see the oesophagus ends in a blind pouch. As there is no way through from mouth to stomach corrective surgery is required normally within days in order for the child to feed. Common problems that occur is swallowing, digesting food, reflux, respiratory issues & additional ongoing surgical procedures.

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Nothing available for children to view

The problem is at present there is no information for these children to view.

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Nothing available for children to view

Targeted for parents and medical professionals

Most of it is targeted, at parents and/or interested medical professionals.

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Nothing available for children to view

Targeted for parents and medical professionals

Information textual

Information is hugely textual and lacks fun visuals

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Nothing available for children to view

Targeted for parents and medical professionals

Information textual

Difficult to explain

This condition is often difficult to explain to the child and to others.

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6 year old son asking questions

Wants to know everything about his condition

Aware that he is different from his friends

What prompted me to address this issue is my 6 year old son who is asking questions, he’s all too aware that he is a bit different from his friends now that he is attending school. His meals have to be planned and supervision is needed when eating. He tends to not eat as he’s aware of getting food stuck & the attention this can attract. He takes numerous medicines daily and is often absent from school during the winter months due to his respiratory issues. He is all too familiar with his trips to the hospitals & dreads going. Yet he wants to know everything about his condition and I cannot show him anything...I only can tell him.

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80%

60%

80%

80%

93%Getting food stuck

Anxiety eating socially

Fearful hospital

Product for medicines

Information for carers

Parents response

With this in mind I sent out surveys to the parents of children similar to my son and their response confirmed the problem... 80% of parents said they find it difficult to explain to their child about getting food stuck 60% said their child experiences anxiety eating in social environments like school/parties or away from the family home 80% of children are anxious and fearful attending their hospital visits 80% of parents would like to see a visual product regarding the medicines their child uses 93% would like to see information for carers, teachers or anyone who their child is in their care

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100%

88%100%

87% Access to internet

Own an iPad or tablet

Downloads apps for child

App younger child TOF/OA

Parents response

I then wanted to know if the parent’s habits were similar to myself in what they use regarding internet and apps... 100% of parents have access to the internet 80% of parents own an iPad or tablet 100% say they download apps for their children 87% would use a visual product aimed for the younger child with Tracheo oesophageal fistula and oesophageal atresia

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Design a product for children

To design a product for children

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Design a product for children

Simplify make it Visual Fun

Simplify and make it visual fun

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iPad App

This is where chew the iPad app steps in

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The main topics will be eat

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Play

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Medicine

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Eat

Eat will include the issues surrounding food, safe and non safe, the dangers involved and what to do encase of a choke

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Play will highlight the difficulties around the winter months, respiratory, the Tof cough, what medicines to take and a diary of episodes of sickness for hospital appointments

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Medicine

Medicines will feature the general types of what is used, what they do, how they help and a little reminder of when to take them. I will be adding another topic Hospital this will involve meeting the team... the Surgeon, Anaesthetist and Doctors. It will have a visual breakdown of medical procedures that the child will encounter. The aim is for the child to build a trust between the medical team involved in their care and help ease any anxieties The children will interact and have fun with this app, whilst learning at the same time.

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7 billion world population

1 in every 3500 births

150 UK each year

2 million children worldwide

The market potential for this app is huge...with an estimation of 7 billion people in the world, and one in every 3,500 births born each year with the condition. It could be right in saying there is 2 million children worldwide living with this. In the UK alone 150 children are born each year and 1000 parents to date have joined the UK charity support group TOFS. There are 11 support groups nationally and internationally...this app could benefit all.

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Children Adults Parents Carers Others

Niche

The target market will be a niche market specifically targeting the children of school age. However children who are now adults with the condition, parents, carers and other individuals who may struggle with the concept of Tracheo Oesophageal Fistula and Oesophageal Atresia...will be interested in buying this app.

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Professor Mike Shields Paediatrics Childrens Hospital Royal Victoria Belfast

Doctor Tamara Mallett Paediatrics Childrens Hospital Royal Victoria Belfast

Doctor Caroline Love Skin Specialist Yorks Hospitals England

Tracheo Oesophageal Fistula Support TOFS Charity

I am in contact with numerous medical professionals who care for my son and they are willing to view and aid in development and validation of the project. Professor Mike Shields, Paediatric Respiratory Consultant and Doctor Tamara Mallett, from the Royal Victoria Hospital for Sick Children, in Belfast Doctor Caroline Love, from York Hospitals, England who is also an adult TOF (Trustee of the TOFS Charity) The Tracheo Oesophageal Fistula Support (TOFS) Charity, Nottingham England

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French Charity AFAO (French Association Oesophageal Atresia)

Research on Oesophageal Atresia €15,000 20th May 2013

I have applied for funding to the French charity AFAO (French Association Oesophageal Atresia).Who launched a call for applications for all research on Oesophageal Artesia. The winning project will receive €15,000 and will be selected by its originality and relevance to the research they prefer. My project could certainly be of interest to them and touches on an area of their preferred research. Closing date is 20th May 2013.

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French Charity AFAO (French Association Oesophageal Atresia)

Research on Oesophageal Atresia €15,000 20th May 2013

Pharmaceutical companies Pfizer and Glaxo- Smith-Kline

Pharmaceutical companies like Pfizer and Glaxo-Smith-Kline that manufacture acid reduction drugs may be interested in funding this project.

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French Charity AFAO (French Association Oesophageal Atresia)

Research on Oesophageal Atresia €15,000 20th May 2013

Pharmaceutical companies Pfizer and Glaxo- Smith-Kline

C-TRIC Clinical Translational Research and Innovation Centre

Dr Caroline Love pending discussions with other trustees from the TOFS Charity may help with applying for funding

After chatting to Dr. Caroline Love there may be a possibility of the charity TOFS helping me to apply for funding

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COSTS 4000 to– 5000 euro Donegal Company Infinitetouch.ie app development 4 to– 6 weeks

STRENGTHS and WEAKNESSESS Personal , Niche market, Contacts, No money

PROMOTE and SELL Tracheo Oesophageal Fistula Support Charity via their own website

and Facebook members page

I have been quoted 4000 – 5000 euro from Donegal Company Infinitetouch.ie for app development based on 4 – 6 weeks completion. STRENGTHS & WEAKNESSESS personal, Niche market, Contacts, No money for development of app PROMOTE & SELL the charity TOFS will display a link via their website and Facebook page with members worldwide this would reach a wider audience.

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Infographic designed to be used in hospitals or schools

Prototype of the app in discussion

Dr. Kim Chilman Blair CEO and founder of Medikidz a kids comic

based on medical conditions has enquired about the condition with

Medikidz interested in designing and publishing a comic book

An Infographic has been designed to be used in hospitals or places that matter in order to break down the concept of TOF. I’m currently in talks with a developer for production of a Prototype of the app for android phone. Dr.Kim Chilman Blair CEO and founder of Medikidz a kids comic based on medical conditions has approached me to enquire about the condition & with the possibility of Medikidz designing and publishing a comic book on the condition.

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Chew could be launched during the awareness week 12th- 19th October 2013TOFS family conference Coventry England

Guest speakers

Respiratory Consultant Professor Morice from Hull, Mr Shalinder Singh from QMC Nottingham

Mr Joe Curry from GOSH Geneticist Dr Charles Shaw-Smith from the Royal Devon and Exeter Hospital

Representatives from other European support groups attending

Chew could be launched during the Awareness week on the 12th- 19th October 2013 run by the Tracheo Oesophageal Fistula Support (TOFS) Charity. It starts off with the TOFS family conference which is held in Coventry, England. Guest speakers will include various consultants. Representatives from the other European support groups will be attending.

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French support group for OA/TOF www.afao.asso.fr

US support group for OA/TOF www.eatef.org

US group for VACTERL www.tefvater.org

US group for VACTERL www.thevaterconnection.org

UK Tracheo Oesophageal Fistula Support www.tofs.org.uk

Australian support group foundation.rch.org.au/?page=Auxiliaries-OARA

German support group for OA/TOF www.keks.org

Dutch support group for OA/TOF www.voks.nl

Swedish support group for VACTERL www.vacterl.com

Oesophageal Atresia Association in Quebec www.aqao.org

Support Groups

I attended the conference in 2009 and will be attending this year. With 11 support groups worldwide what a perfect opportunity to launch the app.

Slide 43 Journals

Goyal, A., et al. (2006). "Oesophageal atresia and Tracheo-oesophageal fistula",

Archives of Disease in Childhood-Fetal and Neonatal, Edition.91.5, pp.381-384.

Love, Caroline, and Alyn H. Morice (2012). "After repair of Tracheo-oesophageal atresia."

BMJ: British Medical Journal 344.

Legrand, Céline, et al. (2012) "Long-term outcome of children with oesophageal atresia type III."

Archives of disease in childhood 97(9), 808-811.

Green, Michael J and Myers Kimberly R. (2010) "Graphic medicine: use of comics in medical

education and patient care" BMJ : British Medical Journal Vol 340

Williams Ian C M. (2012) "Graphic medicine: comics as medical narrative" BMJ : British Medical Journal

A short summary of the Journals I’ve looked at

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The TOF Child book

Kelley T with Littman J, 2006, The Ten Faces of Innovation, London. Profile Books

Olles R.N., 2000, What Colour is Your Parachute? Umbrella Publications London

Ridderstrale J, Nordstorm K, 2002, Funky Business, Sweden, Bookhouse Publishing AB

You can now view the TOF Child book online at this link through the TOFS charity website

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Any

Thank you. Any questions?