Научная статья на тему 'Childhood cancer International (foundations/parents/survivors)'

Childhood cancer International (foundations/parents/survivors) Текст научной статьи по специальности «Клиническая медицина»

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Текст научной работы на тему «Childhood cancer International (foundations/parents/survivors)»

May 2016, Moscow, Russia

OF PEDIATRIC HEMATOLOGY and ONCOLOGY

CHILDHOOD CANCER INTERNATIONAL (FOUNDATIONS/PARENTS/SURVIVORS)

ABSTRACT NO.: 0-090

Keep up your spirit to conquer cancer

Sazkia Gabriellia Zakaria

Indonesia Childhood Cancer Foundation (YOAI)

Key words: cancer, patient

Introduction. My Name is Sazkia Gabriellia Zakaria. I was born in Tangerang, Indonesia on February 14th 1994. I have leukemia in 2007 when I was 13 years old and finished my treatment in 2009. After finishing the treatment I joined YOAI (Indonesian Childhood Cancer Foundation) in 2010 and became a member of Cancer Buster Community/CBC (Childhood Cancer Survivors Community. My hobbies are singing and writing diaries. I created a song for myself based on my experience as a cancer patient.

Aim. As survivor I would like to motivate other cancer patients to have the same spirit as mine. I have so many goals that I want to complete in my life. I want to help all of my friends who suffer from cancer by giving them support. They need to keep up their spirit, and never give up.

Materials and methods. Writing Diaries: As a patient we get easily bored. So to kill the time, writing is one of the easy options to express yourself. This can be an inspiration to become a lyric of song or storybook, and I choose to make a song.

Results. With the help of my family I was able to produce my own album. I will donate 40 % of the income for the cancer patients through the Indonesian Childhood Cancer Foundation (YOAI). And for other children with cancer throughout the world.

Conclusion. Up to present I am still Writing songs in English and Indonesian. I was able to give several copies of my album to foundations at ICCCPO Conference in Hongkong. I wish my idea will inspire other cancer patients. I would like to make them believe that every cloud has a silver lining. There must be a blessing behind this cancer we suffer.

ABSTRACT N0.: 0-091

Motivating social interactions and adaptations, giving strong self confidence and leadership character. Aim. To improve the quality life of Survivors in all aspects.

Materials and methods. 1. Survivor Cancer Camp: Each year we invite from all regions of Indonesia to gather at a special resort place to get a different environment. They are given

skills on: Creativity, Collaboration, Problem Solving, Communications and Management as well as knowledge on how to overcome the Late Effect of Medications.

2. Upgrading & Workshops: The programs are made with the support of Doctors, Psychologists, Nutritionists and Motivators Trainers through Group Discussion and Team Building.

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Indonesian childhood cancer foundation's succesful programs and initiatives for survivors

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Zanty Zanzibar

Indonesian Chilhood Cancer Foundation

Key words: YOAI Survivors

Introduction. Indonesian Childhood Cancer Foundation / Yayasan Onkologi Anak Indonesia (YOAI) is a foundation which was set up by Parents who have children with cancer. Our concern for children with cancer are high and would very much like to give them a better life and future. We have been through with the survivors since they were diagnosed with cancer. One of our activities is to support children with cancer until they survive and become independent. Therefore we made several successful Recovery Programs which consist of

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SOCIÉTÉ INTERNATIONALE D'ONCOLOGIE PÉHATRIQUE

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Results. After nine years we notice they become stronger in many ways. Some have become entrepreneurs, artists, lawyers and doctors. Many works for various companies such as Banks, Hospitals and Hypermarkets. Several got married and have children.

Conclusion. It is proved that children with cancer can be cured and that our Recovery Program has been successfully absorbed by our survivors. They finished their educations, become independent and reached their dreams.

ABSTRACT NO.: OP-138

The central venous catheter (CVC) checklist for anaesthesiologists

D.Sh. Bikkulova

Federal Research Center of Pediatric Hematology, Oncology and Immunology named after Dmitriy Rogachev, Moscow, Russia Key words: CVC

Introduction. A safe insertion of all types of central venous catheters (CVC) has always been of vital importance. There are some factors such as the rotation of employees, the introduction of new types of catheters, a change in preferences of treating physicians when choosing a central venous access device that can affect this process. In order to ensure a patient's safety and to control the situation, it is important to use control checklists for CVC insertion. Aim. It is to provide good clinical practice and prevent complications.

Materials and methods. In the FRC PHOI CVC insertion is performed by anesthesiologists. Since 2013 checklists have been completed annually, from February till May. Upon their completion, the checklists are analyzed and the work of the medical staff is corrected accordingly.

Results. Over the last three years (2013-2015) (146 + 254 + 406 = 806 (100 %)) checklists have been analyzed. The age range of patients with hematological and oncological diseases is 2 months - 18 years old. The checklists were completed by 7 doctors annually. This work was carried out in accordance with the hospital protocol. Year in, year out the number of CVC insertion procedures has been increasing, the proportion of catheters types used has been changing. For instance, in 2013 long-term CVCs were inserted into the subclavian or the internal jugular vein. There is a high frequency of complications entailed by the insertion of long-term CVCs into the subclavian vein. Thus long-term CVCs are nowadays inserted only into the internal jugular vein, whereas short-term CVCs - only into the subclavian vein. In 2014 some cases of repeated puncturing of the subclavian vein performed by 3 doctors were registered. The punctures were performed without US guidance. Further analysis showed that the puncture site and the direction of the needle when puncturing the subclavian vein had been incorrect. A number of training simulations for doctors were conducted in order to change the technique of the procedure. In addition, US guidance of the subclavian vein was put into practice. In 2015 there were 78 cases of CVC substitution identified in 40 checklists. The reasons for the substitution included accidental removal of CVC by a patient 22 cases, a substitution of a long-term CVC for a short-term CVC - 17, thrombosis - 13, infection - 11, an incorrect position of the internal tip of CVC - 6, a surgery performed near the puncture wound - 1 case. Accidental catheter removal was observed in adolescents aged 14-18 years, and as a result a brochure about CVC for adolescents was compiled. In order to eliminate the causes of catheter-related infection and thrombosis, a recertification of the staff as well as training for newly employed nurses, etc. were carried out.

Conclusion. A regular analysis of checklists allows one to identify mistakes and errors in work and individual features of the staff and patients as well as helps to improve the organizational activity of the hospital administration. And we understand that permanent self-analysis of work provide good clinical practice and prevent complications.

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ABSTRACT NO.: P-405

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Photohromotherapy alternative method for treatment hemangioma in infants

Yu. Kozel, E. Sheiko, A. Shihlyarova, E. Zlatnik

Rostov Scientific Research Institute of Oncology, Rostov-on-Don, Russia

Key words: fotohromotherapy, hemangioma, infants

Introduction. Photochromotherapy is a topical treatment method for hemangiomas in children. Aim. This study aims to analyse the clinical effects of noncoherent monochromatic red light emitting diodes on infantile hemangiomas (IH) children from the new-born to one-and-a ¡5 half year old for the period of 2004 to 2015.

Materials and methods. We investigated the effect of PHT (photohromotherapy) of red spectrum A = 635 nm with irradiation dose 3^86-3^96 J/cm2 to 2010 children with IH. Results. The results showed a significant regression was in 100 % of simple IH; in 92 % of mixed ones and 84.5 % of cavernous forms after PHT. Progression of IH was seen only in 1 patient (0.95 %) subjected to tumor destruction. After the first course of PHT, simple and mixed forms of IH regression were registered in half of the patients (49.4 and 50.2 % respectively), in cases of cavernous IH - only in 15 % of babies. Ultrasound control demonstrated reduction of tumors' size in 46-71 %, decrease of blood flow in 11-22 % and formation of capsule in 40 % of the cases. After the second and the third courses of PHT proportion of the patients with regression of IH continued to increase. Decrease of tumors' size was found in 98 %, blood flow was weak or absent in 96 % of cases, clear borders or capsule were described in 96 % of cases, the absence of the feeding vessel - in 80 cases. VEGF levels in sera of patients with IH before the treatment were 221.1 ± 12 pg/ml, which was 3.1 times higher than in healthy children (72.6 ± 3.2 pg/ml). After effective PHT VEGF levels in patients' sera became close to normal (68.9 ± 2.0 pg/ml). In cases of ulcerative complications of IH the positive local effect of PHT on suppuration and inflammation was observed. The clinical PHT practice has been allowed to grain the effects of healing the wound just after the first course (10 procedures). After the second and third courses (about 25-30 procedures), the significantly tumor size decrease up to the regress and formation of scar has been observed. Ultrasound control confirmed the absence of tumor feeding vessel. Conclusion. The gaining effects of healing the wound by improving the reduced exudative and epitelisation phases, the significantly tumor size decrease up to regress has been observed.

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May 2016, Moscow, Russia

OF PEDIATRIC HEMATOLOGY and ONCOLOGY

ABSTRACT NO.: 0P-407

The greif care programs in Children's Cancer Association of Japan (CCAJ)

Hiroko Ishibashi, Satomi Onda, Kaori Nonomura, Asako Katayama, Megumi Yokokawa, Akiko Higuchi

Children's Cancer Association of Japan

Key words: children, cancer

Introduction. CCAJ Children's Cancer Association of Japan) is a Japanese non-profit organization founded in October, 1968 by parents who had lost a child due to cancer. Since its opening, CCAJ has helped children receive proper and accurate diagnosis and treatments equally, and improved quality of life of patients and their families, with earnest hope to overcome all pediatric cancer. Thanks to the recent medical progresses in cancer treatments in Japan, approximately 80 % of pediatric cancer are now said to be curable. While 2000 children are diagnosed with cancer and begin their treatments every year, we lose 500 other children to cancer at the same time. As our grief care program, we have been engaged in providing comfortable and safe places to which they can belong.

Aim. Introducing and sharing our achievements in grief care program who lost a child to cancer together with ones from other countries.

Materials and methods. 1. Listen to what parents want to say and provide consultation by social worker. 2. Facilitate group sessions 8-9 times a ear for mourning parents. 3. Host a short-term intensive support group for mothers who lost a child within a year. 4. Hold regional peer support groups for parents nationwide. 5. Provide events and volunteering opportunities for parents who lost a child.

Results. Starting from peer support groups, we now work with social workers to facilitate various support group sessions as our grief care program: short-term intensive sessions to help parents release suppressed emotions and share feelings, social groups for specific groups of parents (parents who lost their only child without a sibling, or fathers only and so on), open sessions for everyone to join and more. Some of our parents have started recreational activities themselves, such as outdoor camping by fathers, with other parents with similar backgrounds. They create their own comfortable and safe space in which they do not need to share their pain or set up a specific theme for gathering. Conclusion. These meetings widen the circle of friends and enable peer support activities to be passed down to the next generations to come. These acts by parents drive us to do what we have been doing for nearly 50 years. Our social workers at CCAJ are committed to provide various occasions to our parents to have chances to meet other parents who went through similar experiences. We help them to find their own safe haven where they can feel connected in order to prevent them from being emotionally casted out from society and being even more saddened by it. Major roles in grief care those parents, and social worker is supporter to draw their power by providing their places.

ABSTRACT N0.: 0-408

Client - centered psychological assistance to children with cancer and their families

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A.S. Petrova

Regional non-governmental organization "Children and Parents Against Cancer", Saint-Petersburg, Russia

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Key words: psycho-oncology, project of client - centered psychological assistance

Introduction. Childhood cancer is a tragedy for the whole family. First of all, it endangers the child's life. A sudden change in the way of life of a family and its social status is very stressful. This crisis point is often critical for family relations. However, the psychological climate in the family is the most important factor influencing the treatment process of the child and its result. We implement the project of Psychological assistance to children with cancer and their families in the children's Department of the Oncology Institute named after N.N. Petrov.

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Aim. It is important to organize an integrated medico-socio-psychological support of families with children with cancer as well as precise methods of dealing with them. Materials and methods. The uniqueness of the project due to the application of techniques of client - centered therapy for cancer children and their families. The author of the method is K. Rogers who based it on building a certain kind of relationship between client and therapist, and leads to a systematic personal growth, accepting responsibility, self-knowledge.

Results. It helps to accelerate the adaptation process in the Hospital, to make crisis support, to remove the primary stress. Children and parents that coming to the treatment get the consultation of the psychologist. Many of the primary clients become permanent, allowing to accompany the family at every stage of treatment and support in the process of accepting the diagnosis. ^

Conclusion. We would like to share our own experience of the process of the integrated support of each child, allowing to consider interests and personality of patients.

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SIOP ASIA CONGRESS

ABSTRACT NO.: O-409

"Forum of Winners" as a mean of rehabilitation of teenagers and young adults who suffered serious illness

A.S. Petrova

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Regional non-governmental organization "Children and Parents Against Cancer", Saint-Petersburg, Russia Key words: "Forum of Winners", rehabilitation of teenagers and young adults who suffered serious illness

Introduction. 11-14 June 2015 it was the First International Forum of Winners. That was the platform for meeting of of teenagers and young adults who have had childhood cancer. Strengthening patients community is an important tool for rehabilitation and to improve the quality of care for sick children. Aim. The purpose of The Forum was to strengthen the patient community for reabilitation and sharing the experience.

Materials and methods. The Forum program suggested psychological groups, discussions, presentation of regions of participants, lectures of specialists, exchanging of the experience (for example the report of the colleagues from Serbia, which engaged in the rehabilitation of adolescents and conducted its training for the Winners) and an informal part. In the forum participated the representatives from different regions. The St. Petersburg community shared their experience of participation in rehabilitation programs. All of them have participated in different rehabilitation programs: for example camps.

Results. We managed to combine cured people from different regions of our country. This laid the basis for the formation of a community of winners. Participants learned about the long-term consequences of childhood cancer, to understand that they are not alone in their experience. The forum gave them the opportunity for open communication with each other and with experts.

Conclusion. The Forum helped to lay the prospect of continued cooperation of people who suffered serious illness.They've became a team with its purpose to help each other and children who have the same problems now. We've got a lot of thanks and have a plan to make The Forum every two years.

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