Clinical Research Directory

Quality of Life in Young Patients Undergoing Bone Marrow Transplant

Sponsor: Rigshospitalet, Denmark

Summary

Young patients at the age of 18-29 years undergoing allo-HCT lack studies which specifically describe their unique problems. Validated EORTC QLQ-C30 questionnaires aimed at either children or adults have been used in international studies. But there has been a lack of a questionnaire design that can capture health-related quality of life after cancer treatment with greater relevance for the young patient. Together with young patients and hospital professionals quality of life-related health concerns and unique social and emotional problems were found that were more relevant to the young than to children and adults and validation of a new youth-relevant EORTC QLQ-AYA (AYA: adolescent and young adult) scheme that includes an extra focus on the youths problems has been carried out among young cancer patients. This questionnaire will be made available for testing in our patient population of allo-HCT patients and can for the first time map the quality of life of younger alloHCT patients. This study includes two cohorts of patients. One is a retrospective/cross sectional study cohort of patients previously undergoing transplantant between 2010 and 2022, the other is a smaller prospective study examining the QoL before and after transplant. The knowledge from the surveys will be important for health professionals understanding of the young peoples specific problems. Mapping and paying attention to the problems and possible solutions will be an essential component in helping the young allo-HCT patient. The results will be correlated with clinical data: age, diagnosis, pretreatment with or without high-dose whole-body irradiation, and the nature and degree of late sequelae (survivor toxicity and rehabilitation)

Official title: Young Patients' Quality of Life After Allogeneic Bone Marrow Transplantation at the Hematology Department at Rigshospitalet Investigated With a Youth-specific Questionnaire - EORTC QLQ-AYA

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