Classical Hodgkin Lymphoma
Conditions
Keywords
Social participation, Children and adolescents with cancer, Quality of life with hodgkin-lymphoma, Social inequalities and cancer
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).
Interventions
None listed
Sponsors
German Cancer Aid
University of Giessen
Martin-Luther-Universität Halle-Wittenberg
Study design
Observational model
COHORT
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
10 Years to 18 Years
Healthy volunteers
No
Inclusion criteria
* 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
Exclusion criteria
* other (simultaneous) malignancies
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| 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
| Measure | Time frame | Description |
|---|---|---|
| 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 |
| 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 |
| Understanding of illness | one month after diagnosis until two years | Illness Perception Questionnaire, IPQ |
| Autonomy | one month after diagnosis until two years | Subscale Autonomy from the Health-Related Quality of Life Questionnaire for Children and Adolescents, Kidscreen |
| Self-efficacy | one month after diagnosis until two years | Self-Efficacy for Managing Chronic Disease 6-Item Scale, SES6 |
Other
| Measure | Time frame | Description |
|---|---|---|
| Psychosocial needs | one month after diagnosis until two years | Short-Form Supportive Care Needs Survey Questionnaire, SCNS-SF34 (parental questionnaire) |
| Use of psychosocial care services | one month after diagnosis until two years | (parental questionnaire) |
| Satisfaction with treatment | one month after diagnosis until two years | Questionnaire to assess the Satisfaction with the Treatment, FBB (parental questionnaire) |
| Parental coping with chronic childhood disease | one month after diagnosis until two years | Coping Health Inventory for Parents, CHIP (parental questionnaire) |
| Family atmosphere | one month after diagnosis until two years | Family Environment Scale, FES (parental questionnaire) |
| Consequences of chronic conditions and disability in childhood and adolescence for the family | one month after diagnosis until two years | Impact on Family Scale in Families with Children with Disabilities, FaBel (parental questionnaire) |
Contacts
Primary ContactJulia Roick, MSc
Outcome results
None listed