Katja I. Braam

Health Information Needs of Childhood Cancer Survivors and Their Family

Knowledge about past disease, treatment, and possible late effects has previously been shown to be low in survivors of childhood cancer and their relatives. This study investigated the information needs of childhood cancer survivors and their parents and explored possible determinants for differences in information need and health‐related Internet use.

Design of the Quality of Life in Motion (QLIM) study: a randomized controlled trial to evaluate the effectiveness and cost-effectiveness of a combined physical exercise and psychosocial training program to improve physical fitness in children with cancer

BackgroundChildhood cancer and its treatment have considerable impact on a childs physical and mental wellbeing. Especially long-term administration of chemotherapy and/or radiotherapy impairs physical fitness both during and after therapy, when children often present with muscle weakness and/or low cardiorespiratory fitness. Physical exercise can improve these two elements of physical fitness, but the positive effects of physical exercise might be further increased when a childs wellbeing is simultaneously enhanced by psychosocial training. Feeling better may increase the willingness and motivation to engage in sports activities. Therefore, this multi-centre study evaluates the short and long-term changes in physical fitness of a child with a childhood malignancy, using a combined physical exercise and psychosocial intervention program, implemented during or shortly after treatment. Also examined is whether positive effects on physical fitness reduce inactivity-related adverse health problems, improve quality of life, and are cost-effective.MethodsThis multi-centre randomized controlled trial compares a combined physical and psychosocial intervention program for children with cancer, with care as usual (controls). Children with cancer (aged 8-18 years) treated with chemotherapy and/or radiotherapy, and who are no longer than 1 year post-treatment, are eligible for participation. A total of 100 children are being recruited from the paediatric oncology/haematology departments of three Dutch university medical centres. Patients are stratified according to pubertal stage (girls: age ≤10 or >10 years; boys: ≤11 or >11 years), type of malignancy (haematological or solid tumour), and moment of inclusion into the study (during or after treatment), and are randomly assigned to the intervention or control group.DiscussionChildhood cancer patients undergoing long-term cancer therapy may benefit from a combined physical exercise and psychosocial intervention program since it may maintain or enhance their physical fitness and increase their quality of life. However, the feasibility, patient need, and effectiveness of such a program should be established before the program can be implemented as part of standard care.Trial registration numberNTR1531 (The Netherlands National Trial Register)

Malignant melanoma as second malignant neoplasm in long-term childhood cancer survivors: A systematic review†

This systematic review provides information on malignant melanoma as second malignant neoplasm (SMN) after childhood cancer and evaluates its risk factors. Study reports describing incidences of SMN and malignant melanoma as SMN in a population of childhood cancer survivors (CCS) were included. Of 151,575 CCS, 4,010 (2.6%) children developed an SMN, 212 of which were melanoma (5.3% or 0.14% of all CCS). The following risk factors for malignant melanoma as SMN were identified: radiotherapy, or the combination alkylating agents and anti‐mitotic drugs. Melanomas are most frequently observed after Hodgkin disease, hereditary retinoblastoma, soft tissue sarcoma, and gonadal tumors. Pediatr Blood Cancer

Landelijke richtlijnen voor follow-up van overlevenden van kinderkanker

SamenvattingMembers of the Late Effects Taskforce of the Dutch Childhood Oncology Group (dcog) and of the Haematology-Oncology Section of the Dutch Paediatric Association are involved in the development of guidelines for the follow-up of childhood cancer survivors. The recommendations of these guidelines are based on the best available clinical evidence, current guidelines and clinical experience of late effects specialists. The guidelines will lead to a uniform and standardised post-treatment care and long-term follow-up of childhood cancer survivors in the Netherlands. The information in the guidelines will be of importance for care providers in paediatrics, general medicine, internal medicine, gynaecology/obstetrics as well as for other specialists and particularly for childhood cancer survivors themselves. The information will lead to an increased awareness for all Dutch care providers who are responsible for the health problems of childhood cancer survivors. The development of guidelines for childhood cancer survivors is an important part of a new Dutch project: Late Effects Registry (later). Within this new national project patient and treatment data as well as follow-up data on childhood cancer survivors in the Netherlands will be registered. The project later aims at: to coordinate and to evaluate care of the survivors, and to stimulate new research in the field of late effects of childhood cancer.SamenvattingVanuit de skion (Stichting Kinderoncologie Nederland) en de sectie Kinderoncologie-Hematologie van de Nederlandse Vereniging voor Kindergeneeskunde worden in Nederland richtlijnen opgesteld voor de follow-up van overlevenden van kinderkanker meer dan vijf jaar na diagnose. De aanbevelingen in deze richtlijnen voor follow-up zijn gebaseerd op het beschikbare bewijs, bestaande richtlijnen en het klinische inzicht van experts op het gebied van de late effecten. Deze richtlijnen zullen leiden tot een uniforme en gestandaardiseerde langetermijnzorg voor overlevenden na kinderkanker in Nederland. De informatie van de richtlijnen is belangrijk voor zorgverleners in het veld van kindergeneeskunde, huisartsgeneeskunde, interne geneeskunde, gynaecologie/obstetrie en andere specialisten en ook voor de overlevenden van kinderkanker. De informatie zal bijdragen aan een algemene bewustwording van de Nederlandse zorgverleners voor de gezondheidsproblemen van kinderen en jongvolwassenen die genezen zijn van kinderkanker. De richtlijnontwikkeling voor de follow-up van overlevenden van kinderkanker vormt een belangrijk onderdeel van het nieuwe landelijke project Lange Termijn Effecten Registratie: later. Binnen dit landelijke project zullen patiëntengegevens, gegevens over de oorspronkelijke behandeling en follow-upgegevens van alle overlevenden van kinderkanker in Nederland geregistreerd worden. Het doel van deze registratie is om de patiëntenzorg in Nederland te coördineren, te evalueren en nieuw wetenschappelijk onderzoek te stimuleren.

Effects of a combined physical and psychosocial intervention program for childhood cancer patients on quality of life and psychosocial functioning: results of the QLIM randomized clinical trial

Although survival rates in childhood cancer have improved, prevention and reduction of late effects remain important. This study evaluates the effects of a combined physical exercise and psychosocial intervention on health‐related quality of life (HrQoL) and psychosocial functioning in childhood cancer patients.

Factors influencing childhood cancer patients to participate in a combined physical and psychosocial intervention program : Quality of Life in Motion

For a multi‐center randomized trial investigating the effects of a 12‐week physical and psychosocial intervention program for children with cancer, we invited 174 patients (8–18 years old) on treatment or within 1 year after treatment; about 40% participated. Reasons for non‐participation were investigated.

No Efficacy for Silicone Gel Sheeting in Prevention of Abnormal Scar Formation in Children with Cancer: A Randomized Controlled Trial

Background: Placement of a totally implantable venous access device in children with cancer often leads to hypertrophic scars after its removal. This study investigates whether the use of silicone gel sheets has a beneficial effect on scar outcome in children with cancer. Methods: In a three-arm randomized controlled trial, the effects of use of silicone gel sheets for 2 and 6 months were assessed and compared with no intervention in children with cancer after removal of the totally implantable venous access device. Silicone gel sheets were first administered 14 days after surgery. The 1-year follow-up included measurements at seven time points. Next to scar size assessment, the modified Vancouver Scar Scale was used to assess scar outcome. Results: Thirty-six children participated. For hypertrophy, no significant differences were found between the two intervention groups and the control group. However, at 1-year follow-up, the 2-month application group showed significantly smaller scars compared with the group receiving silicone gel sheet treatment for 6 months (p = 0.04), but not when compared with the control group (p = 0.22). Longitudinal multilevel analyses could not confirm these findings and showed no significant intervention effects on both outcomes. Conclusions: This study provides no strong evidence to support the use of silicone gel sheets after totally implantable venous access device removal in children with cancer. There seems to be a small benefit for scar width with application for 2 months. However, for hypertrophy, the scar outcome shows no significant difference between the control group and the 2-month and 6-month treatment groups. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, I.

Totally Implantable Venous Access Device in Children with Cancer Lead to Disfiguring scar

Background In pediatric cancer patients scars of totally implantable venous access devices (TIVAD) are often widened and hypertrophic. This study report on the prevalence and deviation of abnormal scarring in children with a TIVAD and to describe the influencing factors for this abnormal scarring. Methods In a cross-sectional study scars of 122 childhood cancer patients (age 1–21 years) were evaluated; 72 patients had a TIVAD in-situ and in 50 the TIVAD had been removed. Outcome parameters were hypertrophy (modified Vancouver Scar Scale (mVSS), scar surface area, pain, and itching. Scar abnormality was defined as mVSS of >2, or scar width >3mm. Results Abnormal TIVAD scars were found in 107 participants. The mVSS score was higher in patients ≤45 months after removal and the widest >45 months after TIVAD removal. Multivariable analyses showed that the mVSS score was positively related with scar width (mm) and children being ≤45 months after TIVAD removal. Furthermore, TIVAD scar width was positively related with age at last TIVAD surgery, and associated with suture material. In conclusion, there was a high incidence of abnormal TIVAD scars with some pain and itching complaints. However, no typical cancer related influencing factors were associated with increasing abnormalities.

Cost-effectiveness of a combined physical exercise and psychosocial training intervention for children with cancer: Results from the quality of life in motion study.

&NA; This study was performed to estimate the cost‐effectiveness of a combined physical exercise and psychosocial intervention for children with cancer compared with usual care. Sixty‐eight children, aged 8‐18 years old, during or within the first year post‐cancer treatment were randomised to the intervention (n = 30) and control group (n = 38). Health outcomes included fitness, muscle strength and quality adjusted life years; all administered at baseline, 4‐ and 12‐month follow‐up. Costs were gathered by 1 monthly cost questionnaires over 12 months, supplemented by medication data obtained from pharmacies. Results showed no significant differences in costs and effects between the intervention and control group at 12‐month follow‐up. On average, societal costs were &U20AC;299 higher in the intervention group than in the control group, but this difference was not significant. Cost‐effectiveness acceptability curves indicated that the intervention needs large societal investments to reach reasonable probabilities of cost‐effectiveness for quality of life and lower body muscle strength. Based on the results of this study, the intervention is not cost‐effective in comparison with usual care.