Methodological aspects of health‐related quality of life measurement and analysis in patients with multiple myeloma

Nielsen, Lene Kongsgaard; Abildgaard, Niels; Jarden, Mary; Klausen, Tobias Wirenfeldt

doi:10.1111/bjh.15759

Cited by 14 publications

(6 citation statements)

References 96 publications

(132 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Those strategies resulted in a very high PRO completion rate of 95%, with just 5% non-response. PRO completion rates in longitudinal studies of patients with MM are often not reported, and of the studies, where this information was reported, the PRO completion rate was 78-98% [53]. Only one study has reported a higher PRO completion rate compared to our findings.…”

Section: Discussioncontrasting

confidence: 61%

“…Methodological considerations concerning PRO assessment time points were included as part of the study planning. Clinical visits are frequently chosen time points for PRO assessment in clinical trials of MM patients [53]. This decision has the advantage of reducing the risk of NR, since patients have the opportunity to complete the questionnaires at the hospital with assistance from the study nurse.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Strategies to improve patient-reported outcome completion rates in longitudinal studies

et al. 2019

Self Cite

View full text Add to dashboard Cite

Purpose 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. Education of study nurses in the avoidance of NR, electronic reminders, 7-day response windows and real-time monitoring of NR were integrated in the study. Patients complete PRO assessments at study entry and at 12 follow-up time points using electronic or paper questionnaires. The effect of the electronic reminders and real-time monitoring were investigated by comparison of proportions of completed questionnaires before and after each intervention. Results The first 271 included patients were analysed; of those, 249 (85%) chose electronic questionnaires. Eighty-four percent of the 1441 scheduled PRO assessments were completed within the 7-day response window and 11% after real-time monitoring, achieving a final PRO completion rate of 95%. A significant higher proportion of uncompleted questionnaires were completed after the patients had received the electronic reminder and after real-time monitoring. Conclusions Electronic reminders and real-time monitoring contributed to a very high completion rate in the study. To increase the quality of PRO data, we propose integrating these strategies in PRO studies, however highlighting that an increase in staff resources is required for implementation.

show abstract

Section: Discussioncontrasting

confidence: 61%

Section: Discussionmentioning

confidence: 99%

Strategies to improve patient-reported outcome completion rates in longitudinal studies

et al. 2019

Self Cite

View full text Add to dashboard Cite

show abstract

“…Dimensions are described by the arithmetic mean and standard deviation. As suggested by Nielsen et al 22. Mann-Whitney U test was used to compare the dimensions within two groups (gender, treatment).…”

Section: Methodsmentioning

confidence: 99%

Health-related quality of life in Croatian general population and multiple myeloma patients assessed by the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires

Fičko

Pejša

Zadnik

2019

Radiology and Oncology

View full text Add to dashboard Cite

Background The impact of disease and treatment on the patient’s overall well-being and functioning is a topic of growing interest in clinical research and practice. The aim of this study is to obtain reference data on quality of life of Croatian general population. Further, we aim to assess the impact of the disease and its primary systemic treatment on their health related quality of life (HrQoL) in multiple myeloma (MM) patients. Patients and methods Participants for the first part of the study were randomly selected from adult Croatian population. In the clinical part of the study MM patients were included as prospectively diagnosed within two years in two major Croatian haematological centres. The EORTC QLQ-C30 in both trials and QLQ-MY20 in MM patients only were applied for HrQoL assessment. Results Gender, age and place of residence have great impact on quality of life scores in Croatian population. The MM patients at the time of diagnosis have lower QLQ-C30 scores for global quality of life, functional and symptom scale scores, as well as single items. The type of disease followed by the choice of therapy options are important HrQoL determinants. Conclusions The norm values available now for Croatian population will help to interpret HrQoL for clinicians and aid in planning cancer care interventions. This study identified treatment effect consistent with those from other observational studies and provided new data on HrQoL across two different treatment choices for MM patients.

show abstract

“…The Danish prospective, nation-wide, observational survey (QoL-MM) [20] framed our study. The study population was a subpopulation of the QoL-MM cohort referred to as QoL-MM-C19.…”

Section: Study Design and Populationmentioning

confidence: 99%

Quality of Life in Danish Patients with Multiple Myeloma during the COVID-19 Pandemic

Redder

Möller

Johnsen

et al. 2021

COVID

Self Cite

View full text Add to dashboard Cite

In general, governments and health authorities have taken precautions during the COVID-19 pandemic to reduce the viral spread and protect vulnerable citizens. Patients with multiple myeloma (MM) have an increased risk of being infected with COVID-19 and developing a fatal course due to the related immunodeficiency. We investigated how Danish patients with MM reported their quality of life (QoL) pre-COVID and during COVID, in an ongoing longitudinal QoL survey. The responses given during the first and second wave of the COVID-19 pandemic were pooled, analyzed and compared to the same period the year before. We hypothesized that locking down the society would have caused deteriorated QoL and that patients living alone and those under the age of 65 would be particularly affected by the situation. Surprisingly, our study showed the opposite. Statistically significant and clinically relevant differences were primarily found during the first lock down and represented reduced fatigue, improved role functioning, decreased insomnia and improved physical health summaries in patients below 65 years of age. These results indicate that Danish patients with MM might have felt protected and safe by COVID restrictions. Otherwise, the questionaries used in QoL-MM survey may not have been able to capture the impact of the COVID-19 pandemic. Importantly, this indicates that QoL survey data obtained in clinical studies, in countries with highly developed health-care systems using standard questionnaires during the pandemic, allow room for interpretation without being adjusted for the impacts of the pandemic.

show abstract

Methodological aspects of health‐related quality of life measurement and analysis in patients with multiple myeloma

Cited by 14 publications

References 96 publications

Strategies to improve patient-reported outcome completion rates in longitudinal studies

Strategies to improve patient-reported outcome completion rates in longitudinal studies

Health-related quality of life in Croatian general population and multiple myeloma patients assessed by the EORTC QLQ-C30 and EORTC QLQ-MY20 questionnaires

Quality of Life in Danish Patients with Multiple Myeloma during the COVID-19 Pandemic

Contact Info

Product

Resources

About