August 2015

PanCare NewsletterVolume 7Issue 1No. 14August, 2015

Editor:Julie Byrne, Irelandjbyrne@boyneresearch.ie

Guest Editor:Anna Panasiuk, Polandanna.panasiuk@umb.edu.pl

Editorial Board:Els Vandecruys, BelgiumTomas Kepak, Czech RepublicAlexandra Brownsdon, UKZsuzsanna Jakab, HungaryThorsten Langer, GermanyGisela Michel, SwitzerlandHerwig Lackner, Austria

www.pancare.eu

Dear Friends,

PanCare enjoyed an excellent meeting in Dublin in May, of which you can read more in this issue of our Newsletter. Many thanks to Patricia McColgan, Garry Owens and Julie Byrne as our local hosts. Many thanks also to Anna Panasiuk for being instrumental in the creation of this issue of the Newsletter.For its 16th meeting PanCare returns to Austria September 23-25; this time we meet in the lovely city of Vienna thanks to Eva Frey and her co-workers. I hope to see many of you there.In the relatively short period that the PanCare Society has been active, much has been accomplished in the way of getting large studies and projects funded and working. In addition to this we have had the great pleasure to travel to different countries and places in Europe where we have been presented with excellent scientific information as well as dealing with more practical and hands-on issues. During this time we have had the great fortune to form many strong bonds and friendships that we continue to develop. Our meetings also tell us that there is a long way ahead of us if we are to address all relevant issues in childhood and adolescent cancer survivorship. I am happy and proud to be a part of this work together with so many talented and dedicated individuals.I wish you all a nice and warm ending of summer and a productive autumn.

With my very best regards,Lars Hjorth, MD, PhDChairperson PanCare

INSIDE THIS ISSUE:Greetings from the PanCare Board ............................... 1Report from the 15th PanCare Meeting ......................... 21st Childhood Cancer Day in Czech Republic ............... 3International Training for Survivors to Volunteer in Paediatric Oncology Units ..............................................4 Dutch Adult Survivors of Childhood Cancer Organization (VOX) ..............................................................................5Advocacy Masterclass for Survivors ...............................6Recipe for late effects clinic- based on roundtable discussion ................................................................... 7-8Upcoming meetings ....................................................... 8

Volume 7, Issue 1, No.14

PanCare Newsletter

The Spring 2015 PanCare meeting took place in the lively city of Dublin, Ireland. As always, we heard from

the local organizers about their model of care for childhood cancer survivors. Among the speakers were

our hosts – Patricia McColgan and Garry Owens – who presented their struggles with their own children’s

disease and their lives after cancer, which prompted them to start the CanCare4Living initiative.The

fantastic presentations included one on support for survivors delivered by the CanTeen project and

Evelyn Griffith, who is its leader; Lucie Cingrošová on the first Czech Republic’s Childhood Cancer Day

festivities, and Katie Rizvi on the Youth Cancer Open Space Summit in Romania. Some of these activities

are described further in this issue of the Newsletter.

The programme was packed. During the General Assembly we

welcomed new PanCareBoard members – Katie Rizvi, Tomáš Kepak,

Aimilia Tsirou and Jaap den Hartogh, as well as welcoming back re-

elected board members – Gill Levitt and Julie Byrne. All were chosen

at the first electronic ballot of the PanCareSociety.

Other presentations covered issues such as oral status of survivors

after radiotherapy, the possibility of DNA repair after radiation,

psychological assessment, and differences in resilience mechanisms.

After the official work of the meeting we all enjoyed a little bit of the

Irish spirit during a fascinating evening in the Trinity College Dining

Hall. A quartet of instrumentalists from the traditional Irish group,

Comhaltas Ceolteórí Eireann, along with a quartet of lovely Irish

dancers had us all up on our feet dancing andjoining in the fun!

Anna Panasiuk, Poland

15th PanCare meeting- Dublin, 27th-29th May 2015

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 2

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 3

For the first time this year, the Czech Republic marked February 15th as the official

Childhood Cancer Day and joined SIOPE community in raising awareness, support and

guidance for oncology children and their families. Under the leadership of the

parental association HAIMA the local organization supporting the cause, Czech

Republic has joined the tradition and will annually devote this day to build awareness

about pediatric oncology by introducing the topic to the general public showing the

amazing bravery of our oncology patients.

Close to 300 children from all eight Czech hospitals treating our pediatric oncology

patients came to enjoy the fun filled day. Festivities throughout the day included

Xbox stations with games, coding stations where kids could learn basics of code and

create their own interactive postcards or games, presentations and seminars with

renowned Oncology doctors and patients, face painting, clowns and much more. All

concluded by a grand video mapping presented by 3dsense a leader in the Czech

Republic for visual arts performances. Their 9 minute video mapping projection on the

facade of the historical concert hall Rudolfinum depicted a story of a child whose

fairytale life was attacked and affected by a disease. The story breathtakingly

portrays the fight between the black monster “disease” and a green warrior

“treatment”. This astounding production is a unique occasion as it is the first time in

the history of Childhood Cancer Day where video mapping is used to bring awareness

of pediatric oncology and shows the story of life before, with and after cancer.

About 350 new cases of cancer in children are diagnosed each year in the Czech

Republic, and are treated in eight hospitals all over the country, in Prague, Brno, Plzen,

Ceske Budejovice, Olomouc, Ostrava, Hradec Kralove, Usti nad Labem. The current

success rate of treatments is over 80%. We believe very strongly that bringing smiles

to our patients faces helps with increasing the success of treatments. We also want to

help the society to better understand these kids and what they and their families go

through. We want to show that the kids are still kids, they still like to smile and play

and go on with their lives, despite having to battle with the disease. We are thrilled to

have be one of the countries acknowledging February 15th, Childhood Cancer Day. We

are already at work on next year's programme.

Come and have fun for a good cause!

February 15th, 2015 – Prague, Czech Republic

By Lucie Cingrošová

You can learn more on the project and see the video at:

www.dendetskeonkologie.cz/en

http://3dsense.org/portfolio/2015-childhood-cancer-day

https://www.youtube.com/watch?v=SjP5VGIdM-E

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 4

By Katie Rizvi (Little People Association, Romania)

International Training for Survivors to Volunteer in Paediatric Oncology Units

Taking further the ideas of the Vienna meeting where survivor groups learned about the Austrian mentoring program, in March 2015 Little People hosted 91 young cancer survivors and paediatric oncology volunteers from 6 European countries on a two-day intensive training to showcase good practice examples of developing psychosocial intervention tools and instruments for working with children and teenagers with cancer in a hospital setting.In a true exchange of experience and knowledge, international cancer survivors shared their thoughts about going back to the hospital as volunteers and in turn were introduced to the specificity and complexity of the award winning intervention program that Little People volunteers and specialists carry out every day in 10 paediatric oncology wards in Romania and Republic of Moldova. The program includes specific therapeutic tools, games and activities, and delivers measurable outcomes on patient behavior and the lived patient experience. It has received numerous national and international awards in the domains of psycho-oncology, social integration and society impact categories.

Cluj-Napoca, the 2015 European Youth Capital was the perfect setting for a meeting so full of energy and enthusiasm, where volunteers learned about powerful storytelling, medical play, pain management, communication, dealing with losses, ethics and media communication and were given the opportunity to practice their newly learned skills in practical group work sessions.Participants agreed that there is a definite need for hosting such international meetings where the emphasis is on a professional approach, complex interventions and creating safe infrastructures for supervised volunteering in paediatric oncology units.

A short video about the International Training event can be viewed here: https://www.facebook.com/YouthCancerEurope/app_212104595551052

Those interested in the 2016 edition please contact Katie Rizvi on katie@thelittlepeople.ro

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 5

Dutch Adult Survivors of Childhood Cancer Organization (VOX) By Jaap den Hartogh

In September 2014 the Dutch Childhood Cancer Parent Organization (VOKK) launched a new

branch of its organization, which is specifically aimed at adult survivors of childhood cancer:

VOX.

For years, the VOKK organized activities and meetings for survivors. But the growing amount

of survivors is growing demanded a new department. The Netherlands counts around 9.000

survivors of childhood cancer.

VOX is developed in order to support and empower adult survivors of childhood cancer and to

involve them in the improvement of long-term care, by national and multidisciplinary

collaboration on the area of care, registration of data and scientific research. VOX has three

major pillars: personal contact, information and advocacy.

A working group of volunteer survivors is collaborating with DCOG LATER and their outpatient

clinics. By not only using their experiences as survivors but also their capacities and skills, VOX

can really make a difference for survivors, individually and as a group, and even for future

survivors of childhood cancer.Through the outpatient clinics, but also by posters, leaflets

and social media, survivors are able to join VOX and its activities. Social media are essential to

stay in contact with the survivors, so VOX facilitates a private contact group on Facebook,

where in a safe setting survivors can share experiences.

In all its activities VOX wants to create a ‘we-ness’. By promoting ‘a sense of us’, a community

is being created that helps survivors to cope with their particular situations. VOX promotes the

idea that being a survivor of childhood cancer does not solely define your identity.

VOX organizes weekends in which there is a focus on coping strategies. Next to that, thematic

meetings, with topics like medical late effects and psychosocial issues, are organized. VOX

is also involved in the organization of the yearly LATER for LATER symposium, a large-scale

symposium which can be seen as a fruit of the collaboration with DCOG LATER.

VOX is involved in CCI Survivors Network. Childhood Cancer International (formerly ICCCPO)

is an international confederation of parent organizations. CCI Survivors Network is part of CCI

and aims to share resources and experiences and provide information to representatives

of childhood cancer survivor groups and organizations from around the world. On October 6,

2015, CCI Survivors Network will host a meeting during the SIOP in Cape Town. This meeting will

help them to develop and sustain their own groups and organizations.

Jaap den Hartogh, Policy Officer LATER/Coordinator VOX, Board Member of PanCare, Member Executive Commity CCI Survivors Network

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 6

By Katie Rizvi (Little People Association, Romania)

Advocacy Masterclass for Survivors in the 2015 European Youth Capital: Cluj-Napoca

Following a 2014 meeting at the Romanian Black Sea coast, where 30 young people from 5 European countries held a focus group and for the first time discussed the need of a European wide youth cancer network, in December Little People Romania hosted the first official Youth Cancer Europe branded Summit in Bucharest, where 15 nations were represented by survivors and youth cancer advocates. Three main topics were identified for further follow up at the December meeting: 1. Age appropriate and equally accessible cancer treatment across Europe2. Long-term follow up and quality of survivorship3. Political and regulatory representation of young people with cancer

To build on the highlighted priorities and empower young cancer survivors to deliver important outcomes and become a relevant stakeholder at political and regulatory level, Little People and the Youth Cancer Europe network organised an Advocacy Masterclass this summer over two days in the 2015 European Youth Capital, Cluj-Napoca. The meeting was kicked off by a joyful march of 150 cancer survivors wearing provoking cancer-related messages on their T-shirts as they entered the Untold Festival, where they were greeted the Mayor of the city as well as representatives of local and national media before they joined 50 000 young people at the concerts of DJ David Guetta and others. British artist Tinie Tempah asked for one of the T-shirts and wore the cancer wristbands on stage!The following days were dedicated to the much-anticipated Advocacy Masterclass. Representatives of 10 nations (Austria, Belgium, Hungary, Ireland, Macedonia, Poland, the Republic of Moldova, Romania, Serbia and Spain) were given an opportunity to build capacity in representation, networking and lobbying and learn skills in advocacy to become more capable of using their leverage with public authorities, legislators and professional organisations. Survivors identified areas of need on a national and international level where organised actions would be needed to take on neglected problems, with the aim of influencing the political and public attitude towards those needs. Most importantly, participants were given the opportuniy to exercise the creation of strategic campaigns through increased community involvement, emphasising the need for survivors to become effective patient advocactes, enabling them to have access to the decision making process, especially for decisions that directly affect their lives. Survivors we able to

share their experience, their needs and frustrations and while learning about pursuing democratic rights through nonviolent actions they were able to identify future goals and commit to specific next steps to take in their home countries, within their own communities. Overall, the European meeting gave a real boost to all young people involved to strengthen their national survivorship communities and build more dynamic networks. The successful meeting was covered by every single local and several national media outlets, making it the most mediatised event so far, with more than 31 articles carried by TV channels, printed and online press and radio. Our social media pages

were followed by more than half a million fans during the days of the meeting. To celebrate our success in style we held a cocktail reception in honour of all cancer survivors in the most historic building in the middle of the city park, with hundreds of onlookers commemorating our victory and sharing in our joy.

Here is a short video about cancer survivor youth “taking over” the Untold Festival:

Here you can hear first hand participant reactions to the Masterclass:

Here is a little teaser from our cocktail reception:

https://www.facebook.com/LittlePeopleRomania/videos/vb.135087612034/10152916426227035/?type=2&theater

https://www.facebook.com/YouthCancerEurope/videos/vb.852402878128045/1050187078349623/?type=2&theater

https://www.facebook.com/LittlePeopleRomania/videos/vb.135087612034/10152939415607035/?type=2&theater

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 7

Recipe for late-effect clinicBy Anna Panasiuk

Dublin's meeting round table discussion was dominated by one topic- how to start a late

effects clinic for childhood cancer survivors. There were presentatives of doctors, nurses,

psychologists and survivors themselves present, who shared their ideas on the matter. They

came up with the list of "key ingredients" or simply A PLAN needed to follow in order to open

LTFU clinic:

1) PEOPLE: The involvement of many people is needed to make this happen; remember that this is a commitment to a permanent service and not a one-person service; the likelihood of success is minimal if you take this on as well as all your daily duties. Therefore, you should start to enroll specialists, such as endocrinologists, cardiologists, gynecologists, etc, anyone who diagnoses and treats adults. After all, it is no longer pediatrics!

Nurses: Not many countries are lucky enough to have clinical nurse specialists who are the pillars of the late effects clinics. Finding dedicated nurses who want to work and learn about the late effects of childhood cancer is the next best option.

Psychologists: there is no question that oncology-trained psychologists are needed in outpatients settings as well, to deal with survivor’s complex need, to help young adults get back into society and pick up their lives.

Social Workers: are essential in helping survivors choose the right educational pathway and career so essential to the healing process; making sure that their material well-being is not an obstacle to achieving their full potential.

Coordinator/gatekeeper/champion: Someone who coordinates all the specialists, ensures that the service runs smoothly. Survivors would gladly see their own pediatric oncology specialist in that role, someone whom they have trusted from day one. However, here comes the unanswered question – do we actually need a new branch of medicine here? This might be a “Late Effects after Cancer” specialist who would recognize all the medical problems of the survivor and help them obtain the care they need. Obviously, this needs further discussion.

2) FUNDS: This may be the most difficult ingredient to secure, since most countries have not allocated money for this kind of care. Here is where each person’s creativity is most needed. We must start with those most involved in a successful outcome, that is, survivors and their parents.They are the most experienced at going to governments, donors, societies, to obtain the funds needed for local projects.

3) PLACE: Make sure that every specialist is under the same roof. Coming to different appointments every week at different locations is hard enough, and even off-putting or dispersing the energy needed to make these visits. Try to gather all the people creating this new service in one building, and make sure that all the tests needed can be done during the same day, rather than having the survivor return for another visit. This would ensure the most efficient use of the time and energy of both survivors and the health care providers. Providing such an efficient and holistic service is an exercise in persuasion, in diplomacy and logistical skill, surely possible with such a talented society as PanCare!

September 22-23 PanCareSurFup General Assembly, Vienna, Austria

September 23-25 16th PanCare meeting, Vienna, Austria

September 25-29 European Cancer Congress, Vienna, Austria

October 8-11 SIOP, Cape Town, South Africa

November 4-6 PanCareLIFE General Assembly, Mainz, Germany

December 17-18 ENCCA General Assembly, venue to be decided

UPCOMING MEETINGS 2015/2016

August, 2015 Vol. 7, Issue 1, No.14 PanCare Newsletter , PAGE 8

October 11 PanCare Brno Concert, Czech Republic

spring 2016 17th PanCare Spring Meeting, Lisbon, Portugal

September 22-23, 2016 5th ESLCCC meeting, Copenhagen, Denmark

October 31-November 3, 2016 World Cancer Congress, Paris, France

4) STANDARD OPERATING PROCEDURES (SOPs): Work out the service plan that follows the guidelines and that is up-to-date with developments in survival studies. Make sure that all staff are properly trained (Maybe we do need another subspecialty after all…).

5) SURVIVORS: Do not forget the recipients of the care. Allow those who are interested to comment and be advocates in their own care. Let them evaluate your work, and point out areas that need improvement! Don’t forget to ask for suggestions and solutions. It is not all on your shoulders!

6) CONTACT: The modern world is packed with technology. Help yourself and use it! Create an internet-based system, where survivors can learn about their problems and if necessary contact the specialist and even make an appointment at your clinic! You might also create a section for the medical personnel where they can learn about late effects and see how to recognize the symptoms that need further investigation. This could be the best choice for general practitioners who have survivors under their care.

GOOD LUCK! WE ARE LOOKING FORWARD TO FUTURE PANCARE MEETINGS TO HEAR ABOUT WHAT YOU HAVE WHIPPED UP WITH THIS RECIPE!

Recipe for late effects clinic- continuation

May 23-24, 2016 PanCareSurFup International Conference, Brussels,