Sarcoma, cancer, survivorship, rare cancer. Sarcomen, kaker, overlevers, zeldzame kanker.
Conditions
Interventions
None
Sponsors
Radboudumc
Eligibility
Inclusion criteria
Inclusion criteria: -Diagnosis of sarcoma sarcoma (according to the ICD-10-GM codes C40 and C41 for bone sarcoma and C49 for soft-tissue sarcoma), between 1/1/2008 and 31/12/2016. -Diagnosed or treated at one of participating centres (Radboud University Medical Centre Nijmegen, Erasmus Medical Centre Rotterdam, University Medical Centre Leiden, Netherlands Cancer Institute Amsterdam, University Medical Centre Groningen) -Must be able to complete questionnaire in Dutch
Exclusion criteria
Exclusion criteria: -Cognitive impairment -Too unwell to complete questionniare
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| •The health-related quality of life of sarcoma survivors (compared to age- and sex-matched normative population) | — |
Secondary
| Measure | Time frame |
|---|---|
| • Defining risk factors for a worse quality of life (compared to normative population): demographics, time to diagnosis and therapy, clinical characteristics (such as tumour type and site, type of treatment, progression/recurrence of disease), ability to work, financial difficulties, social support, psychological distress, information provision, body image, sexuality, ability to perform certain tasks (e.g. brush teeth, do groceries) • Assessing the body image (compared to normative population) • Assessing the psychological distress (compared to normative population) • Examining the level of certain symptoms (such as pain, fatigue, nausea) • Difference in HRQoL, body image, psychological distress, level of symptoms with regards to time since diagnosis • Assessing satisfaction with follow-up schedule • Assessing difficulties sarcoma patients encounter due to the rarity of the disease | — |
Contacts
Public ContactVicky Soomers
Afdeling medische oncologie Radboudumc
Outcome results
None listed