Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| German Cancer Aid | OTHER |
| University of Giessen | OTHER |
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.
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).
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Hodgkin-lymphoma | Children and adolescents aged 10-18 years |
Not provided
| Measure | Description | Time Frame |
|---|---|---|
| Social participation | The Child and Adolescent Scale of Participation, CASP | one month after diagnosis until two years |
| Quality of life | Questionnaire to assess Health Related Quality of Life in chronically ill Children and Adolescents, KINDL | one month after diagnosis until two years |
| Measure | Description | Time Frame |
|---|---|---|
| Understanding of illness | Illness Perception Questionnaire, IPQ | one month after diagnosis until two years |
| Autonomy | Subscale Autonomy from the Health-Related Quality of Life Questionnaire for Children and Adolescents, Kidscreen |
| Measure | Description | Time Frame |
|---|---|---|
| Parental coping with chronic childhood disease | Coping Health Inventory for Parents, CHIP (parental questionnaire) | one month after diagnosis until two years |
| Consequences of chronic conditions and disability in childhood and adolescence for the family |
Inclusion Criteria:
Exclusion Criteria:
Not provided
Not provided
Children and adolescents with hodgkin-lymphoma and their parents
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Julia Roick, MSc | Contact | +49 345 557 1136 | julia.roick@medizin.uni-halle.de |
| Name | Affiliation | Role |
|---|---|---|
| Matthias Richter, Prof. PhD | Institute of Medical Sociology, Martin Luther University Halle-Wittenberg | Study Chair |
| Dieter Körholz, Prof. MD | Center for Pediatrics and Adolescent Medicine, Justus-Liebig University of Giessen |
Not provided
Not provided
| ID | Term |
|---|---|
| D009369 | Neoplasms |
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| one month after diagnosis until two years |
| Self-efficacy | Self-Efficacy for Managing Chronic Disease 6-Item Scale, SES6 | one month after diagnosis until two years |
| Optimism | Subscale from The Bern Subjective Well-Being Questionnaire for Adolescents, BFW | one month after diagnosis until two years |
| Coping | Coping Questionnaire for Children and Adolescents, CODI | one month after diagnosis until two years |
| Sense of coherence | Children Sense of Coherence Scale, C-SOC | one month after diagnosis until two years |
| Behavioural disorders and strengths | Strengths and Difficulties Questionnaire, SDQ | one month after diagnosis until two years |
| 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 | one month after diagnosis until two years |
| Satisfaction with treatment | Questionnaire to assess the Satisfaction with the Treatment, FBB | one month after diagnosis until two years |
| Social support | Social Support Scale, SSS | one month after diagnosis until two years |
Impact on Family Scale in Families with Children with Disabilities, FaBel (parental questionnaire)
| one month after diagnosis until two years |
| Family atmosphere | Family Environment Scale, FES (parental questionnaire) | one month after diagnosis until two years |
| Psychosocial needs | Short-Form Supportive Care Needs Survey Questionnaire, SCNS-SF34 (parental questionnaire) | one month after diagnosis until two years |
| Use of psychosocial care services | (parental questionnaire) | one month after diagnosis until two years |
| Satisfaction with treatment | Questionnaire to assess the Satisfaction with the Treatment, FBB (parental questionnaire) | one month after diagnosis until two years |