It was wonderful to arrive in Berlin and see so many people who were all working towards a common goal - to give a future for all children and young people around the world with cancer and their families.

There were so many different programmes running at the conference, that just understanding the programme was a job in itself, and you felt a bit like, as we say in the UK, “a child in a sweet shop” — so many presentations, speakers and people to talk to who would be interesting and offer more knowledge, that you are not too sure where to start.

As your roving reporter for this year’s conference, I have been able to cover nearly all of the parents’ conference.

In addition to the parents’ conference, I have also been able to share with you other parts of the conference. Because there are so many presentations, and this is an e-newsletter, I offer you a brief introduction - and then give you the presenter himself or herself. I hope you find this useful.

Thursday

Fundraising Workshop

The Fundraising Workshop offered participants with a wealth of experience, exciting ideas and advice.

Presentations from:

Marianne Naafs-Wilstra, VOKK, Holland

Marianne talked of how survivors, their siblings and families generated significant income, but also achieved many life goals too through a major challenge — a 9-day cycle ride covering 600 km.

Jakob Vibild, FMKB – Denmark

Jakob talked to us about Kemo Kasper, a computer generated “super hero” who goes to battle against cancer. This computer game offers the opportunity not only to raise money but to educate too.

W Cui, Guangzhou Childhood Cancer Parents Group

The Magic Bean has not only raised money and awareness of childhood cancer in Guangzhou, but has also been a great way to build a strong relationship between the Childhood Cancer Parents Group and the hospital.

Ann-Mari Hellman and Ylva Andersson, Barncancer Fonden, Sweden

Barncancer Fonden were able to show how product development can act as a motivator to young people, a fund raiser and an awareness raiser. Nearly 20,000 HOPE necklaces had been sold by the time of the conference raising nearly 300,000 Euros.

L Alejandre, AMANC, Mexico

Showed the power of the parents group raising awareness and building relationships. Their activity over the last six years has helped change the way the Mexican Government supports children with cancer.

R S Soepardji, Yayasan Onkologi Anak, Indonesia

Showed how the Childhood Cancer Foundation raises money through events and individual donations to help children with cancer from poor families in Indonesia.

C Wandzura, Kids Cancer Care Foundation of Alberta, Canada

Christine gave a workshop on how to run a special event. It was full of ideas and tips to help you on your way, and good advice to avoid the pitfalls.

After a packed full afternoon, we enjoyed the traditional “Meet and Greet” evening where parents, survivors, and care workers joined together to get to know one another and to understand the impact of cancer in their country. Wonderfully organised by our host organisation and under the watchful eye of Gerlind Bode, each delegate brought food from their country and we were all offered a huge feast of different flavours and tastes.

Friday

R Arceci, Sidney Kimmel Comprehensive Cancer Centre at John Hopkins, USA

Giving a keynote address, Bob Arceci was an exciting presenter. In his presentation - New Horizons in Paediatric Oncology – he took us through quite a bit of history and showed us how the science had developed.  

He also looked to the future and gave us his views on where science can and will go in the future. He spoke about targeted therapy and the impact of the genome studies. But most importantly, he felt that what was very important was to be global about our approach. And that all work done in this area needed to benefit all children with cancer across the globe.

Friday late morning provided us all a great opportunity to hear about survivor issues and the treatment of young people.

Dorothee Schmid, a survivor and psychologist, Germany

Dorothee gave an excellent presentation highlighting the key issues for patients and survivors. She highlighted the need for effective information both for patients, but also for the general public — providing better general awareness. She wanted the myths to be dispelled around cancer and childhood cancer and what survivors can achieve. She also focused on follow-up and aftercare and shared the areas that were important to survivors.

Carole Easton, CLIC Sargent, UK

Carole talked about the work CLIC Sargent is doing with the UK Government, called the National Cancer Survivorship Initiative.  As part of the initiative, CLIC Sargent is building up a full picture of what young people want and need and what their issues are, which she shared with us. She finished the presentation off with a DVD, which can be viewed at www.clicsargent.org.uk.

Dr D Christina Ste fan, South Africa

Shared her research work that she has been doing in South Africa amongst adolescents with cancer. She highlighted the need to listen to young people, to ensure that there are effective transitions from child to youth to adult support.

Friday afternoon was filled with a range of presentations sharing different areas of research from around the world. They included:

M Sitaresmi, Indonesia

In her research investigating the health-related quality of life assessment in Indonesian Childhood ALL, she aimed to assess the health related quality of life and also to understand the influence of demographic and medical characteristics.  Her research showed that parents tended to be more anxious than the children themselves, and she also found much fear and emotional stress, due to dissatisfaction with the medical support provided and the fear of the procedures. In a place where there is nearly 26% abandonment, her research showed a significant need to support the psychosocial needs of the patient and carer was vital.

Dr Rachna Seth, AIIMS, India

In her research into survivors, Dr Seth demonstrated the medical and education effect of cancer on children in India, which she has studied from the survivor clinic.  She also showed that not only is there a significant different between the numbers of boys to girls who get treatment but also who come back for follow up support. The other challenge that she said is faced is how to share the information to both the parent and the child so as not to risk them not returning for on-going support.

E. Hoven, Karolinska Institutet, Sweden

Looking at adult survivors of Childhood CNS Tumours, she reviewed the persistent health care needs and long-term impact on the family. Her findings included that the greater the disability, the greater the needs of the family both psychologically and from a health perspective. She also saw a link between unmet needs and lower levels of education.

A. Borgmann-Staudt, Charite Campus Vichow Klinikum, Berlin University, Germany

In her study of fertility after chemotherapy and radiotherapy, Ms Borgmann-Staudt highlighted the reasons why infertility was experienced. But she also highlighted that there was also a significantly lower level of desire to have children by young people who had survived cancer. Two common reasons for this were fear that their child would have cancer too, and fear that their cancer would come back.

S Gottschling, University Children’s Hospital Homburg, Germany

This presentation took us on a journey through the use of complementary and alternative medicine in paediatric oncology, highlighting the potential benefits of complementary therapy. The challenge is that there is limited research to support some of the claims.

Saturday

On Saturday, we all came together as a Child Cancer Community - nearly 2000 doctors, scientists, nurses, parents and carers and survivors - to hear Prof Alan Craft, Head of Child Health within the School of Clinical Medical Sciences, University of Newcastle upon Tyne, talk about paediatric oncology - the past and the future. He took his audience through the amazing developments over the last centuries, and in his views of the future, he highlighted the importance of the international perspective and the need for global studies and trials.  He also highlighted the important work that SlOP has done to help share knowledge, information, and education across the world.

Alan Craft also praised the work of Tom Voute, a founder member of SIOP 40 years before, who died a month before this year’s conference.

In summary of his perspective on the future advances, he talked about screening, prevention, earlier diagnoses, and new methods of treatment - like targeted therapies. He also outlined what he thought the barriers were to development - the lack of interest by pharmaceuticals, the difficulties of setting up clinical trials and building that better understanding worldwide.

On returning to the Parents’ Conference, we were once again presented with a wide range of speakers who focused on the importance of data collection and registries. Gerlind Bode has written an article about the German Childhood Cancer Registries following Peter Kaatsch’s talk. 

Other speakers included:

I Soelistyo, Indonesian Care for Cancer Kids Foundation

Ira gave us an interesting presentation on how the parent organisation took a role in helping the hospitals in Indonesia set up the childhood cancer registry. In an environment where everything was paper based, and there was no person taking responsibility to manage records, there was limited success in growing a useful database. However, with the support of the Parents’ Foundation, hospitals systems have been computerised and there is now a strategy to deliver a national cancer registry.

Olle Bjork, Barncancer Fonden

Shared with us the development of the Swedish Cancer Registry, which began in 1980.

Peter Kaatsch — Germany Registries

See the article written by  Gerlind Bode.  Go here.  

Interactive Board Session and Annual General Assembly

Saturday afternoon started with a celebratory but very sad moment. Gerlind Bode, Marianne Naafs and Benson Pau of ICCCPO shared their memories of Geoff Thaxter, ICCCPO’s Chair until his untimely death in August last year. Geoff had been very active with ICCCPO for the last 10 years and Vice Chair since 2003. His wife, Gill and their daughter, Becky, were in the hall in Berlin to share the memories with their friends and fellow colleagues. There is an article later in the newsletter about Geoff and the amazing work he did both in the UK and internationally. The child cancer movement misses him deeply. We had another opportunity to remember Geoff when Christine Wandzura presented to the whole conference the “Through my Eyes” project, a photography project presenting how patients feel about cancer, their care, and life. It presented a strong focal point for International Childhood Cancer Day in February each year, giving every country the same theme to work on which provided a stronger focus for international awareness.

What has happened in 2008?

Benson, ICCCPO’s acting Chair, led the ICCCPO Board in sharing with delegates the wide range of activities that the ICCCPO Board have been supporting around the world:

• Irina Ban from NURDOR talked of her work with EURODIS, which is a pan-European patient organisation for people with rare diseases. In a meeting in Barcelona, earlier in 2008, 17 European countries were represented along with ICCCPO. The main focus was learning about how clinical trials could be set up and the importance of them.  EURODIS has also drawn together the FDA, pharmaceuticals and parent organisations in a round table discussion on orphan drug development. This is the beginning of some important work.

• Julian Cutland shared information about the meeting and workshop they held in April in Johannesburg, which launched the ICCCPO Handbook. 8 different African countries were represented, including Nigeria and Zimbabwe. It provided much information and also provided much food for thought. It is very hopeful that children throughout Africa will gain from this knowledge sharing.

• Other meetings had been run in Muscat, Oman, Russia and Macedonia. And there is planned a meeting in Beirut. This is ensuring that information and support is being shared across many countries.

• In June, 16 countries gathered together at a meeting in Quito more than 80 people representing 48 organisations! This was a first for Latin America and augurs well for the conference in São Paolo.

• In Canada and North America there has been a big drive to recruit more members. This will provide a greater pool of information and best practice to share.

• In Oceania, through lobbying from the parents groups and others, New Zealand has provided funding for three years to support children with cancer in the pacific islands. Previously there haven’t been any services available. And last year, the Tonga Child Cancer Foundation was set up. Plans for the future include setting up a Centre of Excellence in Fiji.

In the conference interactive session, there were many subjects discussed and they included:

• 2009 marks ICCCPO’s 15th Anniversary, and a special book is going to be produced to show the success story. For more information about this, contact the secretariat.

• The Through my Eyes project was a great way to provide focus for International Childhood Cancer Day. It was felt that there needed to be a theme and a hook to develop the stories from. For further information, contact Christine Wandzura.

• Members discussed the need to ensure continuity of ICCCPO, and there was a call for more Board Members and regional representatives in future years. It is vital to ensure that people with energy, vision and passion engage with the organisation. Not only does ICCCPO offer a place to share knowledge, information and best practice, but it also offers the base for worldwide advocacy. Through the Survivors Group, ICCCPO and SlOP, you have the therapeutic alliance. It was important to work together to lobby the political and medical bodies throughout the world, like the UICC and WHO.

• The work of World Child Cancer Foundation was shared with members. WCCF is the fundraising arm to ICCCPO.  It’s objective is to help make a reality the WHO declaration that all children should have right to access optimal treatment. Through funding from business people and major donors, WCCF will fund projects in developing countries to provide support and relief to families across the world. Two projects have already been started. A project in Malawi and one in Colombia will be the flagship projects for the WCCF. For more information, look at the website at www.wccf.org

• The articles of confederation were amended to allow board members to have a 3 year term for 3 years, and the chair having 4 terms. It also allowed for a small number of board members to become advisors.  This is part of ICCCPO’s strategy for ensuring continuity into the future.

• It was announced that the ICCCPO website was to be redesigned and launched in 2009. Julian Cutland, who has been managing the website since 2001, was thanked for the huge amount of work that this involved. The new website would take account of new design and technology and was being created at no cost to the organisation. 

• The 2009 conference programme was being produced and there was a request for abstracts. There was also a call to members to attend the conference in São Paolo to support families in Latin America. As part of the conference discussion, there was a debate about the info-market and its future. More information on the conference is available from Anders Wollmén and Anita Kienesberger.

Sunday

The conference continued to offer a wealth of presentations of best practice, activities and research. They included:

Marianne Naafs-Wilstra, VOKK, Holland

Shared a structured reward system for children with cancer, in the shape of the bravery beads programme. By using beads as a reward, they were able to provide a point of understanding of what the child is going through; they created a bond; and they stimulated communication.

Shambhu Prasad Kadariya, Cancer Society Nepal

Shared with the conference the Nepalese perspective. In such a rural landscape, families with children with cancer face isolation, lack of support and services, and inability to pay. The Cancer Society Nepal try to raise awareness, support patients and their families with psychosocial and financial support, and establish palliative care centres.

J Lamont, Candlelighters, Ottawa, Canada

Shared one of their programmes using art and art therapy to support siblings of children and young people with cancer.  Not only does it give them an outing and attention for them, but using art, they are able to draw out some of their emotions and issues enabling greater communication.

In addition to the parents’ conference, the survivors group had their own programme.

For presentations from that part of the conference, please contact Prudence Walker-Cuttance on iccsnetwork@gmail.com

Nurses Sessions

Below are presentations from the Nurses conference, where many different research projects were shared.

Living with childhood cance r — family members’ experiences and needs. 

Maria Bjork

Maria discussed a study on how cancer and its treatment affect family members. They observed and interviewed 17 families, noting parents’ and siblings’ swings between insecurity, worry, gratitude and optimism, and showed how a good relationship with staff can help families. The enthusiastic audience asked questions afterwards.

Cancer childhoods: analysis of data from an ethnographic study of childhood cancer in British Bangladeshi children

Paula Kelly

Paula talked about her investigation into the impact of cancer on British Bangladeshi children living in the UK, including economic effects, relationships with parents, child rights and cultural behaviour. She advocated normalisation strategies, although her study showed that children tend to resist adults trying to implement these strategies.

Struggling on: experiences of foreign-born parents in childhood cancer care in Sweden

Pernilla Pergert

In a lively talk and question and answer session, Pernilla described the powerlessness felt by Sweden’s foreign-born parents when struggling to get the best health care for their children. Health care staff need to be more aware of problems and bridge the obstacles to create trustful co-operation in the fight against

childhood cancer.

The experience of families with children who’ve received a haematopoietic stem cells transplant (HSCT)

Marie-France Vachon

Marie-France explained that HSCT (bone marrow transplant) can be a very stressful experience for a child and their family, including the sibling donor. She believes it’s important to normalise the treatment, making it a day like any other - although the children’s biggest problem tends to be boredom - and to get fathers more involved.

The process of relinquishing - the parental struggle between loss and preservation of their child receiving palliative care

Marijke Kars

Parents play the most important role in supporting a dying child, but at the same time they have to deal with their own grief. They have to try to make the most of the time they have with their child, while being aware of their inevitable death and the need to let go. It was great to see so many of the audience responding to this emotive subject.

Evaluating support groups for brothers and sisters of children with cancer

Margaretha Nolbris

A very interesting talk about the feelings of siblings and how we can help them to express the m, through painting or by sharing their experiences with a peer group.  The 8-18 year olds studied found the group a therapeutic way to listen, recognise similar experiences, find inner strength and build their own identity.

Implementing a pain protocol in a paediatric haematology and oncology ward

Jaklien Bistoen

A Belgian team in Ghent University Hospital is using a holistic approach to pain management through better communication, improved knowledge, accurate pain assessment and standard treatment plans.  The very well-informed audience were most appreciative of this detailed presentation.

An appreciative inquiry approach to paediatric oncology nurse education at the University Children’s Hospital, Belgrade

Jelena Lazic

Jelena works at the oldest children’s hospital in the Balkans. She explained that hospital staff had become aware of a lack of systematic clinical education, and decided to devise an education programme. Nurses are now more self-confident and self-sustaining, without compromising their dedication to their patients.

An appreciative inquiry approach to practice improvement in clinical care

Karin Orgulas

Tallinn Children’s Hospital wanted to improve nursing education and identify the core values of positive change partnership.  They also needed to optimise resources in a small oncology unit, so they decided to create a programme based on patient information about diseases, chemotherapy and potential complications.

The importance of a standardised telephone triage practice by nursing staff and doctors in a paediatric oncology unit

Panteleimon Perdikaris

Panteleimon works at a hospital in Athens where there is no standardised telephone triage practice, so all the parents’ calls, day or night, were being diverted to the physician in charge. They have now started a project to involve the nursing staff more, improve the quality of information, reduce unnecessary calls and identify FAQs.

Collaboration between doctors and nurses in providing information to patients and their families

Goda Vaitkeviciene

Goda’s hospital in Vilnius, Lithuania, found that cancer patients’ families were sometimes complaining of a lack of information. It was agreed that more communication between nurses and doctors would help.  Now they hold regular meetings where nurses and doctors are equal partners in the discussions. A very informative presentation.

Multidisciplinary support for professionals working in paediatric oncology

David Hobin

Another appreciative inquiry! This one was used to develop a support mechanism so that staff at the Birmingham Children’s Hospital Oncology / Haemotoiogy Unit could discuss and explore challenging issues related to their work. They hope this will reduce stress and conflict for the workforce and improve cross-discipline working.

Telephonic advice to patients and parents by paediatric oncology nursing staff: identifying areas for improvement A FECS (Federation of Europe Cancer Society) project

Marjolein Lakerveld

An enthusiastic audience welcomed this talk on just one part of a massive 2-year project involving 15 teams from all over Europe. The Emma Children’s Hospital in Amsterdam audited and assessed their clinic telephone line to standardise and document the information given to parents of children with cancer.

Symptom assessment with patient surveys

Christina Baggott

The University of California compared the symptoms declared by patients in a questionnaire with the symptoms reported by their clinicians. I wasn’t surprised to hear that the patients wrote down much more than the clinicians reported, and there were large discrepancies in the assessments for nausea, vomiting and diarrhoea.

Strategies to reduce central venous catheter (CVC)-related bloodstream infections (BSIS) in paediatric oncology patients

Rita Secola

Very informative! I learned that CVCs are in-dwelling catheters for patients who need multiple deliveries of medications and therapies. Unfortunately they are quite risky, with BSIS mortality rates of 1225%.  Research is now being carried out to find out whether staffing levels or patient acuity can help reduce these mortality rates.

Enteral nutrition during blood and marrow transplantation

Ellen Olson

The Children’s Healthcare of Atlanta carried out a study to find out whether enteral feedings can work for paediatric BMT (blood and marrow transplant) patients. They studied 31 paediatric BMT patients with anorexia or inadequate calorie intake, and discovered that enteral feedings do work and have advantages over TPN. 

Pilot study into low level laser therapy (LLLT) in the treatment of oral mucositis on a paediatric haematology/oncology ward

Veronique Van de Velde

Children often suffer severe oral mucositis during induction therapy for ALL or after high-dose chemo.  This pilot survey showed that LLLT, used with standard oral care, had an immediate analgesic effect, improving patient comfort and healing lesions. The audience reacted enthusiastically to this very positive presentation.

Post-operative nausea and vomiting (PONV) in children with brain tumours: care at the beginning of the continuum

Susan Neufeld

Susan reminded us that the successful management of PONY is vital to the recovery of children after surgery. It causes discomfort and distress, Increases cranial pressure, and can actually delay recovery.  However, the Incidence of PONY is not high enough to warrant aggressive prevention and treatment strategies.

The benefits of working together: a collaborative approach to standardising care for paediatric oncology patients in NSW

Dianne Cotterell

An inspiring presentation about people working together successfully. Staff from 3 hospitals in New South Wales have been collaborating for 9 months. They’ve improved their professional relationships and nursing care, reconnected with their share-care partners, and created a voice for paediatric oncology nursing in the adult cancer world.

Developing nursing care guidelines for children with cancer and their families

Masayo Uchida

Another very informative talk. In Japan, nursing care for children with cancer presents problems, as many nurses have limited experience in this kind of care and there are no benchmarks to guide them.  Masayo told us how they are developing guidelines to help nurses throughout the cancer journey, from initial communications onward.

Nutrition in paediatric oncology units in the UK and Ireland — a survey of practice

Karen Selwood

I was surprised to hear that there isn’t a consistent approach to nutritional support, education or assessment for children with cancer in the UK and Ireland. This was proved by the results of a questionnaire sent to 21 paediatric oncology centres, sent to nursing staff and dieticians. 100% of the nurses responded and 66% of the dieticians.

Focus on nutrition by a nursing working group from Central America: 1 year follow-up

Terezie Mosby

Terezie told us very movingly that in Central America, primary and secondary malnutrition are common among children with cancer.  This can be caused by financial problems, understaffed hospitals, poor communication with kitchen staff, and a lack of nutritional standards. A few significant changes have been made, and more are planned.

Reaching a national consensus on an approach to low risk febrile neutropenia: the challenges of a Delphi survey

Faith Gibson

Febrile neutropenia is the second most common reason for admission to children’s oncology wards, but there is widespread variation in practice throughout the UK. Even the definitions of ‘ fever’ and ‘neutropenia’ differ. Faith explained how guidelines are now being developed and unified thanks to the results of a Delphi survey.

A pilot program to follow up adult survivors of childhood cancer in British Columbia, Canada

Grace Chan

The program evaluated the health status of survivors who were at highest risk for late effects of treatment. However, only 19% of former patients accepted the invitation to participate. New health problems were detected in 50% of these respondents - but 100% of them found the visit useful and informative.

Innovative role development for paediatric oncology nurses

Jeni Moodie

An audience of many different nationalities responded positively to this presentation on how the Children’s Cancer Centre in Australia trains nurses to be CNCs (Clinical Nurse Coordinators). CNCs provide expertise in coordination, education and research, to ensure optimum care. Future aims for these nurses include developing mentoring skills.

Five years of nurse practitioners in paediatric oncology (NPPOs): what has been achieved?

Corry van den Hoed-Heerschop

Since September 2004, the Erasmus MCSophia Hospital in Rotterdam has employed 3 NPPOs to coordinate, structure and standardise the care of children with ALL.  During that time their role has evolved, and in future their functions will grow to include prescribing medication and caring for other oncological groups.

Improving quality, reducing risk and increasing safety in the paediatric oncology setting

Patti Byron

Many factors can affect patient safety, so it’s essential to reduce risks and mistakes to an absolute minimum. At the British Columbia Children’s Hospital, they have created a new role of Quality and Safety Leader, who works with oncology program and hospital leaders to identify and reduce risks. A very thought-provoking presentation.

The conference was a huge groundswell of views, opinion, good practice and support.  Parents who were there for the first time all commented on how it had encouraged them not just with many good ideas to put into practice, but also with renewed vigour to make a difference, knowing that there was a worldwide network of support behind them.