Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study

Abstract Background Patients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals...

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Autores principales: Mia Sommer, Lene Kongsgaard Nielsen, Lars Børty Nielsen, Rasmus Froberg Brøndum, Marlene Maria Nielsen, Anne Stoffersen Rytter, Charles Vesteghem, Marianne Tang Severinsen, Tarec Christoffer El-Galaly, Martin Bøgsted, Mette Grønkjær, Lone Jørgensen
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Publicado: BMC 2021
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spelling oai:doaj.org-article:ce184fa0ab4249ae8ac66854880706252021-11-08T10:58:41ZPatient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study10.1186/s12955-021-01887-61477-7525https://doaj.org/article/ce184fa0ab4249ae8ac66854880706252021-11-01T00:00:00Zhttps://doi.org/10.1186/s12955-021-01887-6https://doaj.org/toc/1477-7525Abstract Background Patients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals who use patient-reported outcomes to identify who will have specific sensitivities in particular health-related quality of life domains may be able to individualize and target treatment and supportive care, both features of precision medicine. Here, in a cohort of patients with relapsed or progressive hematological cancer, we sought to identify health-related quality of life domains in which they experienced deterioration after relapse treatment and to investigate health-related quality of life patterns. Method Patients were recruited in connection with a precision medicine study at the Department of Hematology, Aalborg University Hospital. They completed the European Organization for Research and Treatment of Cancer questionnaire and the Hospital Anxiety and Depression Scale at baseline and at 3, 6, 9, and 12 months after the relapse diagnosis or progressive cancer. Modes of completion were electronically or on paper. Clinically relevant changes from baseline to 12 months were interpreted according to Cocks’ guidelines. We quantified the number of patients with moderate or severe symptoms and functional problems and the number who experienced improvements or deterioration from baseline to 12 months. Results A total of 104 patients were included, of whom 90 (87%) completed baseline questionnaires and 50 (56%) completed the 12-month assessments. The three symptoms that patients most often reported as deteriorating were fatigue (18%), insomnia (18%), and diarrhea (18%). The three functions that patients most often reported as deteriorating were role (16%) and emotional (16%) and cognitive (16%) functioning. Conclusion In this study, patient-reported outcome data were useful for identifying negatively affected health-related quality of life domains in patients with relapsed or progressive hematological cancer. We identified patients experiencing deterioration in health-related quality of life during treatment and characterized a potential role for patient-reported outcomes in precision medicine to target treatment and supportive care in this patient group.Mia SommerLene Kongsgaard NielsenLars Børty NielsenRasmus Froberg BrøndumMarlene Maria NielsenAnne Stoffersen RytterCharles VesteghemMarianne Tang SeverinsenTarec Christoffer El-GalalyMartin BøgstedMette GrønkjærLone JørgensenBMCarticleHematological cancerRelapsePatient-reported outcomePrecision medicineHealth-related quality of lifeComputer applications to medicine. Medical informaticsR858-859.7ENHealth and Quality of Life Outcomes, Vol 19, Iss 1, Pp 1-11 (2021)
institution DOAJ
collection DOAJ
language EN
topic Hematological cancer
Relapse
Patient-reported outcome
Precision medicine
Health-related quality of life
Computer applications to medicine. Medical informatics
R858-859.7
spellingShingle Hematological cancer
Relapse
Patient-reported outcome
Precision medicine
Health-related quality of life
Computer applications to medicine. Medical informatics
R858-859.7
Mia Sommer
Lene Kongsgaard Nielsen
Lars Børty Nielsen
Rasmus Froberg Brøndum
Marlene Maria Nielsen
Anne Stoffersen Rytter
Charles Vesteghem
Marianne Tang Severinsen
Tarec Christoffer El-Galaly
Martin Bøgsted
Mette Grønkjær
Lone Jørgensen
Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
description Abstract Background Patients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals who use patient-reported outcomes to identify who will have specific sensitivities in particular health-related quality of life domains may be able to individualize and target treatment and supportive care, both features of precision medicine. Here, in a cohort of patients with relapsed or progressive hematological cancer, we sought to identify health-related quality of life domains in which they experienced deterioration after relapse treatment and to investigate health-related quality of life patterns. Method Patients were recruited in connection with a precision medicine study at the Department of Hematology, Aalborg University Hospital. They completed the European Organization for Research and Treatment of Cancer questionnaire and the Hospital Anxiety and Depression Scale at baseline and at 3, 6, 9, and 12 months after the relapse diagnosis or progressive cancer. Modes of completion were electronically or on paper. Clinically relevant changes from baseline to 12 months were interpreted according to Cocks’ guidelines. We quantified the number of patients with moderate or severe symptoms and functional problems and the number who experienced improvements or deterioration from baseline to 12 months. Results A total of 104 patients were included, of whom 90 (87%) completed baseline questionnaires and 50 (56%) completed the 12-month assessments. The three symptoms that patients most often reported as deteriorating were fatigue (18%), insomnia (18%), and diarrhea (18%). The three functions that patients most often reported as deteriorating were role (16%) and emotional (16%) and cognitive (16%) functioning. Conclusion In this study, patient-reported outcome data were useful for identifying negatively affected health-related quality of life domains in patients with relapsed or progressive hematological cancer. We identified patients experiencing deterioration in health-related quality of life during treatment and characterized a potential role for patient-reported outcomes in precision medicine to target treatment and supportive care in this patient group.
format article
author Mia Sommer
Lene Kongsgaard Nielsen
Lars Børty Nielsen
Rasmus Froberg Brøndum
Marlene Maria Nielsen
Anne Stoffersen Rytter
Charles Vesteghem
Marianne Tang Severinsen
Tarec Christoffer El-Galaly
Martin Bøgsted
Mette Grønkjær
Lone Jørgensen
author_facet Mia Sommer
Lene Kongsgaard Nielsen
Lars Børty Nielsen
Rasmus Froberg Brøndum
Marlene Maria Nielsen
Anne Stoffersen Rytter
Charles Vesteghem
Marianne Tang Severinsen
Tarec Christoffer El-Galaly
Martin Bøgsted
Mette Grønkjær
Lone Jørgensen
author_sort Mia Sommer
title Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
title_short Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
title_full Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
title_fullStr Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
title_full_unstemmed Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
title_sort patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study
publisher BMC
publishDate 2021
url https://doaj.org/article/ce184fa0ab4249ae8ac6685488070625
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