Aim of this study is to investigate the influence of social factors on participation and activity among children and adolescents aged 10-18 years with leukemia, brain tumors, and sarcomas. Furthermore personal and treatment-related factors and their impact on participation will be explored
Background: About 2000 children and adolescents under the age of 18 develop cancer each year in Germany. Because of more differentiated diagnostics and standardized treatment protocols, a high survival rate can be reached for many types of the disease. Nevertheless, patients face a number of long-term effects related to the treatment. As a result, physical and psychological consequences have increasingly become the focus of research in recent years. Social dimensions of health have rarely been investigated in pediatric oncology so far. Yet, there are no robust results that allow an estimation of whether and to what extent the disease and treatment impair the participation of children and adolescents and which factors mediate this effect. Social participation is of great importance especially because interactions with peers and experiences in different areas of life are essential for the development of children and adolescents. Methods: Data are collected in a longitudinal, prospective, observational multicenter study. For this purpose, all patients and their parents who are being treated for cancer in one of the participating clinics throughout Germany will be interviewed within the first month after diagnosis (t1), after completion of intensive treatment (t2) and half a year after the end of intensive treatment (t3) using standardized questionnaires. Analysis will be done by descriptive and multivariate methods. Recruitment: Patients will be consecutively recruited in one of the participating clinics throughout Germany.
Study Type
OBSERVATIONAL
Enrollment
68
Non-Interventional
Institute of Medical Sociology
Halle, Germany
Social participation and activity
The Child and Adolescent Scale of Participation, CASP
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Level of quality of life
Questionnaire to assess Health Related Quality of Life in chronically ill Children and Adolescents, KINDL Subscales: physical well-being, emotional well-being, self-esteem, family, friends, school, and a total score Values: range from 0 to 100 (higher values represent better quality of life)
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Evaluation of the treatment
Questionnaire to assess the Satisfaction with the Treatment, FBB Subscales: success of treatment (range 0-20), relationship to medical team (range 0-28), treatment conditions (range 0-24), and a total score (range 0-72) Values: higher values represent better evaluation
Time frame: End of intensive treatment
Self-concept
Self-Description Questionnaire, SDQ
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Fatigue
Subscale Fatigue from the Questionnaire to assess Quality of Life of Cancer Patients developed by the European Organisation for Research and Treatment of Cancer, EORTC QLQ-C30 Values: range from 0 to 100 (higher values represent higher symptoms of fatigue)
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Social support
Social Support Scale, SSS Values: total score with a range 8-40 (higher values represent higher support)
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Time frame: Within the first month after diagnosis until half a year after intensive treatment
Illness perception
Illness Perception Questionnaire, IPQ
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Self-efficacy
General Self-Efficacy Scale; SWE
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Optimism
Subscale from The Bern Subjective Well-Being Questionnaire for Adolescents, BFW
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Psychosocial problems and strengths
Strengths and Difficulties Questionnaire, SDQ Subscales: emotional problems, conduct problems, peer problems, hyperactivity, and prosocial behavior Values: each scale has a range 0-10 (higher values represent higher problems except prosocial behavior)
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Sense of coherence
Children Sense of Coherence Scale, C-SOC
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Coping
Coping Questionnaire for Children and Adolescents, CODI
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Mental health
Children's Depression Screener, Child-S
Time frame: Within the first month after diagnosis until half a year after intensive treatment
Autonomy
Subscale from The Kidscreen Questionnaire
Time frame: Within the first month after diagnosis until half a year after intensive treatment