Social Inequalities in the Participation and Activity in Children and Adolescents With Hodgkin-lymphoma
- Conditions
- Classical Hodgkin Lymphoma
- Registration Number
- NCT02808520
- Lead Sponsor
- Martin-Luther-Universität Halle-Wittenberg
- Brief Summary
Purpose of this study is to determine the influence of social factors on participation and activity among children and adolescents aged 10-18 years with hodgkin-lymphoma. Furthermore personal and treatment-related factors and their impact on participation will be explored.
- Detailed Description
Hodgkin-lymphoma is a rare malignancy among children and adolescents (about 140 each year in Germany) which is highly curable. Beside this therapeutic success, a lot of therapy-related long-term problems arise (e.g. fertility disorders, thyroid diseases, secondary malignancies). While most of the studies focused on mental and physical impairments, little attention has been drawn to social dimensions of health. Due to the disease and the requirements of the therapy, participation of children with hodgkin-lymphoma can be impaired acutely or chronically. This can be of serious consequences, because participation in daily life is an important component of the development of children and adolescents. To determine the influence of social, personal and treatment-related factors on participation, all patients who were actual treated in the international therapy study EuroNet-PHL-C2 in all of Germany (N ≈ 700) and their parents will be interviewed. Statistical analyses will be done using descriptive and multivariate methods taking account of treatment-related issues (e.g. stage of disease, chemotherapy, radiotherapy, progression/relapse).
Recruitment & Eligibility
- Status
- UNKNOWN
- Sex
- All
- Target Recruitment
- 700
- histologically confirmed primary diagnosis of classical Hodgkin's Lymphoma
- 10-18 years
- written informed consent of the patient and/or the patient's parents or guardian according to national laws
- other (simultaneous) malignancies
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Social participation one month after diagnosis until two years The Child and Adolescent Scale of Participation, CASP
Quality of life one month after diagnosis until two years Questionnaire to assess Health Related Quality of Life in chronically ill Children and Adolescents, KINDL
- Secondary Outcome Measures
Name Time Method Autonomy one month after diagnosis until two years Subscale Autonomy from the Health-Related Quality of Life Questionnaire for Children and Adolescents, Kidscreen
Understanding of illness one month after diagnosis until two years Illness Perception Questionnaire, IPQ
Satisfaction with treatment one month after diagnosis until two years Questionnaire to assess the Satisfaction with the Treatment, FBB
Social support one month after diagnosis until two years Social Support Scale, SSS
Self-efficacy one month after diagnosis until two years Self-Efficacy for Managing Chronic Disease 6-Item Scale, SES6
Optimism one month after diagnosis until two years Subscale from The Bern Subjective Well-Being Questionnaire for Adolescents, BFW
Coping one month after diagnosis until two years Coping Questionnaire for Children and Adolescents, CODI
Sense of coherence one month after diagnosis until two years Children Sense of Coherence Scale, C-SOC
Behavioural disorders and strengths one month after diagnosis until two years Strengths and Difficulties Questionnaire, SDQ
Fatigue one month after diagnosis until two years 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