C81
Conditions
Interventions
Group 1: Arm A (control group): Limited access to the EMBrACe platform, including links to the GSHG homepage and other pre-existing websites, from HL initial diagnosis up to one year after first-line
Sponsors
Universitätsklinikum Köln
Eligibility
Sex/Gender
All
Age
18 Years to 60 Years
Inclusion criteria
Inclusion criteria: Histologically verified initial diagnosis of Hodgkin lymphoma The patient is therapy-naïve with regard to HL Written declaration of consent to participate in the study available The patient agrees that the personal data will be made available to the study in compliance with data protection.
Exclusion criteria
Exclusion criteria: • Inability to communicate in German • lack of compliance
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Subjective level of information measured with the total score of the EORTC QLQ-INFO25 questionnaire one year after the end of HL therapy | — |
Secondary
| Measure | Time frame |
|---|---|
| Health-related quality of life (QoL) before (T0), during (T1), three months after (T2) and one year after HL therapy (T3), measured with the EORTC QLQ-C30 questionnaire; subjective level of information at time points T0-T3; Level of information regarding specific aspects, measured with the individual scales of the EORTC QLQ-INFO25 questionnaire, at time points T0-T3; patient satisfaction, measured with the EORTC QLQ-INFO25 questionnaire, at time points T0-T3; perceived health literacy, self-efficacy, satisfaction from interaction with others affected, unmet needs, measured with the Health Education Impact Questionnaire (HeiQ), at time points T0-T3; Psychosocial stress, measured with the distress thermometer at time points T0-T3; Use of digital health offers: ACTUAL condition of each patient before inclusion in the study, measured via moderators at T0; Evaluation of demographic and socio-economic information, basic disease characteristics and HL therapy, remission status, use of disease-specific offers (e.g. advice on fertility protection, fatigue interventions, rehabilitation), social reintegration, unmet needs, use of other social media beyond the EMBrACe platform, One-year overall survival (OS) and progression-free survival (PFS) as measured by the baseline (T0) and survivorship (T3) questionnaire | — |
Countries
Germany
Contacts
Public ContactKarolin Behringer
Universitätsklinikum Köln
Outcome results
None listed