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).
Study Type
OBSERVATIONAL
Enrollment
700
Social participation
The Child and Adolescent Scale of Participation, CASP
Time frame: 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
Time frame: one month after diagnosis until two years
Understanding of illness
Illness Perception Questionnaire, IPQ
Time frame: one month after diagnosis until two years
Autonomy
Subscale Autonomy from the Health-Related Quality of Life Questionnaire for Children and Adolescents, Kidscreen
Time frame: one month after diagnosis until two years
Self-efficacy
Self-Efficacy for Managing Chronic Disease 6-Item Scale, SES6
Time frame: one month after diagnosis until two years
Optimism
Subscale from The Bern Subjective Well-Being Questionnaire for Adolescents, BFW
Time frame: one month after diagnosis until two years
Coping
Coping Questionnaire for Children and Adolescents, CODI
Time frame: one month after diagnosis until two years
Sense of coherence
Children Sense of Coherence Scale, C-SOC
Time frame: one month after diagnosis until two years
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Behavioural disorders and strengths
Strengths and Difficulties Questionnaire, SDQ
Time frame: 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
Time frame: one month after diagnosis until two years
Satisfaction with treatment
Questionnaire to assess the Satisfaction with the Treatment, FBB
Time frame: one month after diagnosis until two years
Social support
Social Support Scale, SSS
Time frame: one month after diagnosis until two years