Despite advances in treatment, approximately 15% of patients with diffuse large B-cell lymphoma (DLBCL) who achieve complete remission (CR) after first-line therapy will experience a relapse. However, there is no consensus on the optimal follow-up strategies for detecting relapse after achieving CR. This population-based study, based on the Danish Lymphoma Registry (LYFO), identified a total of 1634 patients diagnosed with DLBCL between 2010 and 2017, including 105 patients who achieved CR following first-line R-CHOP-like therapy and subsequently relapsed.
View Article and Find Full Text PDFBackground: In the CONPET study, multiple myeloma patients with abnormal 18FDG positron emission/computed tomography scan after upfront autologous stem cell transplantation were treated with four cycles of carfilzomib-lenalidomide-dexamethasone (KRd). Side effect registrations show that carfilzomib might cause dyspnea, cough, respiratory tract infections, and heart failure. The aims were to investigate patient-reported shortness of breath and dyspnea during KRd consolidation.
View Article and Find Full Text PDFPurpose: Non-response (NR) to patient-reported outcome (PRO) questionnaires may cause bias if not handled appropriately. Collecting reasons for NR is recommended, but how reasons for NR are related to missing data mechanisms remains unexplored. We aimed to explore this relationship for intermittent NRs.
View Article and Find Full Text PDFBackground: Transition of care from hospitalisation to home is a complex process with potential patient safety risks, especially for patients with multimorbidity. Traditionally, the quality of transition of care has been evaluated primarily through readmission rates. However, interpreting the readmission rates presents challenges, and readmission rates fail to capture the patient's perspective on the quality of the care transition.
View Article and Find Full Text PDFJ Patient Rep Outcomes
February 2024
Background: Decisions regarding maintenance therapy in patients with multiple myeloma should be based on both treatment efficacy and health-related quality of life (HRQL) consequences. In the CARFI trial, patients with first relapse of multiple myeloma underwent salvage autologous stem cell transplantation (salvage ASCT) before randomization to carfilzomib-dexamethasone maintenance therapy (Kd) or observation. The primary clinical endpoint was time to progression, which was extended by 8 months by Kd.
View Article and Find Full Text PDFF-Fluorodeoxyglucose positron emission tomography/computed tomography (PET) positivity after first-line treatment with autologous stem cell transplantation (ASCT) in multiple myeloma is strongly correlated with reduced progression-free and overall survival. However, PET-positive patients who achieve PET negativity after treatment seem to have comparable outcomes to patients who were PET negative at diagnosis. Hence, giving PET-positive patients additional treatment may improve their outcome.
View Article and Find Full Text PDFEndocrinol Diabetes Metab Case Rep
March 2023
Summary: Iron metabolism and markers hereof are altered in anorexia nervosa (AN) but far from completely understood. We report a case of extreme hyperferritinemia in a patient with AN and discuss the possible mechanisms and current knowledge about the association between hyperferritinemia and AN. A 20-year-old woman with a history of AN presented with bradycardia, weariness, and malaise in addition to an incidentally very high ferritin level.
View Article and Find Full Text PDFBackground: 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.
View Article and Find Full Text PDFObjectives: To evaluate health-care utilisation and costs, myeloma complications and survival in Danish patients with multiple myeloma (MM) before and after implementation of new early-line treatments in 2009.
Methods: Based on data from the Danish National Health Registers, 3518 patients diagnosed with MM during 2002-2005 or 2010-2013 and randomly matched control individuals were identified, and health-care utilisation and costs were estimated.
Results: Health-care utilisation showed a marked shift from inpatient admissions towards outpatient visits.
Purpose: Results of patient-reported outcome measures (PROMs) are increasingly used to inform healthcare decision-making. Research has shown that response shift can impact PROM results. As part of an international collaboration, our goal is to provide a framework regarding the implications of response shift at the level of patient care (micro), healthcare institute (meso), and healthcare policy (macro).
View Article and Find Full Text PDFBackground: COVID-19, caused by the Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2), has great health implications in older patients, including high mortality. In general, older patients often have atypical symptom presentations during acute illness due to a high level of comorbidity. The purpose of this study was to investigate the presentation of symptoms at hospital admissions in older patients with COVID-19 and evaluate its impact on disease outcome.
View Article and Find Full Text PDFPatients with multiple myeloma (MM) report high symptom burden and functional disabilities resulting in impaired health-related quality of life (HRQoL). Effective evidence-based rehabilitation guidelines are needed for patients with MM to improve HRQoL. The primary aim of this study was to investigate HRQoL in patients with rehabilitation needs living their everyday life.
View Article and Find Full Text PDFObjectives: The prevalence and impact of pain among patients with multiple myeloma (MM) in their everyday life require renewed attention. MM patients' survival has increased considerably over the last decades and active disease episodes are interrupted by longer periods with disease inactivity. The aim with this study is to explore pain intensity and pain interference with daily activities during periods of stable or inactive MM disease.
View Article and Find Full Text PDFBr J Haematol
April 2021
In 2019 the UK Myeloma Research Alliance introduced the Myeloma Risk Profile (MRP) for prediction of outcome in patients with newly diagnosed multiple myeloma (MM), ineligible for autologous stem cell transplantation. To validate the MRP in a population-based setting we performed a study of the entire cohort of transplant ineligible MM patients above 65 years in the Danish National MM Registry. Our data confirmed the value of the MRP.
View Article and Find Full Text PDFPurpose: The quality of patient-reported outcome (PRO) data can be compromised by non-response (NR) to scheduled questionnaires, particularly if reasons for NR are related to health problems, which may lead to unintended bias. The aim was to investigate whether electronic reminders and real-time monitoring improve PRO completion rate.
Methods: The population-based study "Quality of life in Danish multiple myeloma patients" is a longitudinal, multicentre study with consecutive inclusion of treatment-demanding newly diagnosed or relapsed patients with multiple myeloma.
Haematologica
June 2020
Data on the impact of long term treatment with immunomodulatory drugs (IMiD) on health-related quality of life (HRQoL) is limited. The HOVON-87/NMSG18 study was a randomized, phase 3 study in newly diagnosed transplant ineligible patients with multiple myeloma, comparing melphalan-prednisolone in combination with thalidomide or lenalidomide, followed by maintenance therapy until progression (MPT-T or MPR-R). The EORTC QLQ-C30 and MY20 questionnaires were completed at baseline, after three and nine induction cycles and six and 12 months of maintenance therapy.
View Article and Find Full Text PDFMultiple myeloma (MM) is an incurable but treatment-sensitive cancer. For most patients, this means treatment with multiple lines of anti-myeloma therapy and a life with disease- and treatment-related symptoms and complications. Health-related quality of life (HRQoL) issues play an important role in treatment decision-making.
View Article and Find Full Text PDFObjectives: The Danish Myeloma Study Group initiated a randomized, placebo-controlled, double-blinded phase II study to investigate the efficacy of adding clarithromycin to cyclophosphamide-bortezomib-dexamethasone (VCD) induction therapy in transplant eligible, newly diagnosed multiple myeloma patients. The study was prematurely terminated due to severe complications, and no effect of adding clarithromycin was found. The aim of this study was to compare health-related quality of life (HRQoL) between the two groups and to explore the coherence hereof with adverse event (AE) registration by clinicians.
View Article and Find Full Text PDFExp Hematol Oncol
August 2018
Background: The objective of this randomized placebo-controlled study was to investigate the efficacy and safety of clarithromycin in combination with bortezomib-cyclophosphamide-dexamethasone (VCD) in patients with newly diagnosed multiple myeloma eligible for high-dose therapy.
Methods: Patients were randomized to receive tablet clarithromycin 500 mg or matching placebo tablet twice daily during the first 3 cycles of VCD induction therapy. Primary endpoint was to compare the rate of very good partial response (VGPR) or better response after three cycles of VCD combined with clarithromycin or placebo.
Objectives: Multiple myeloma (MM) patients report high symptom burden and reduced health-related quality of life (HRQoL) compared to patients with other haematological malignancies. The aim of this review was to analyse published longitudinal studies including MM patients according to a change in HRQoL scores, which is perceived as beneficial to the patient according to two published guidelines.
Methods: A literature search was performed May 2016.