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

Lene Kongsgaard Nielsen*, Niels Abildgaard , Mary Ellen Jarden, Tobias Wirenfeldt Klausen

*Kontaktforfatter for dette arbejde

Publikation: Bidrag til tidsskriftReviewForskningpeer review

Resumé

Multiple 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. Methodological challenges in longitudinal HRQoL measurements and analyses have been identified, including non-responses (NR) to scheduled questionnaires. Publications were identified for inclusion in a systematic review of longitudinal HRQoL studies in MM, focussing on methodological aspects of HRQoL measurement and analysis. Diversity in timing of HRQoL data collection and applied statistical methods were noted. We observed a high rate of NR, but the impact of NR was investigated in only 8/23 studies. Thus, evidence-based knowledge of HRQoL in patients with MM is compromised. To improve quality of HRQoL results and their implementation in daily practice, future studies should follow established guidelines.

OriginalsprogEngelsk
TidsskriftBritish Journal of Haematology
Vol/bind185
Udgave nummer1
Sider (fra-til)11-24
ISSN0007-1048
DOI
StatusUdgivet - 1. apr. 2019

Fingeraftryk

Quality of Life
Publications
Guidelines
Neoplasms

Citer dette

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title = "Methodological aspects of health-related quality of life measurement and analysis in patients with multiple myeloma",
abstract = "Multiple 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. Methodological challenges in longitudinal HRQoL measurements and analyses have been identified, including non-responses (NR) to scheduled questionnaires. Publications were identified for inclusion in a systematic review of longitudinal HRQoL studies in MM, focussing on methodological aspects of HRQoL measurement and analysis. Diversity in timing of HRQoL data collection and applied statistical methods were noted. We observed a high rate of NR, but the impact of NR was investigated in only 8/23 studies. Thus, evidence-based knowledge of HRQoL in patients with MM is compromised. To improve quality of HRQoL results and their implementation in daily practice, future studies should follow established guidelines.",
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Methodological aspects of health-related quality of life measurement and analysis in patients with multiple myeloma. / Kongsgaard Nielsen, Lene; Abildgaard , Niels; Jarden, Mary Ellen; Klausen, Tobias Wirenfeldt.

I: British Journal of Haematology, Bind 185, Nr. 1, 01.04.2019, s. 11-24.

Publikation: Bidrag til tidsskriftReviewForskningpeer review

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AU - Kongsgaard Nielsen, Lene

AU - Abildgaard , Niels

AU - Jarden, Mary Ellen

AU - Klausen, Tobias Wirenfeldt

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N2 - Multiple 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. Methodological challenges in longitudinal HRQoL measurements and analyses have been identified, including non-responses (NR) to scheduled questionnaires. Publications were identified for inclusion in a systematic review of longitudinal HRQoL studies in MM, focussing on methodological aspects of HRQoL measurement and analysis. Diversity in timing of HRQoL data collection and applied statistical methods were noted. We observed a high rate of NR, but the impact of NR was investigated in only 8/23 studies. Thus, evidence-based knowledge of HRQoL in patients with MM is compromised. To improve quality of HRQoL results and their implementation in daily practice, future studies should follow established guidelines.

AB - Multiple 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. Methodological challenges in longitudinal HRQoL measurements and analyses have been identified, including non-responses (NR) to scheduled questionnaires. Publications were identified for inclusion in a systematic review of longitudinal HRQoL studies in MM, focussing on methodological aspects of HRQoL measurement and analysis. Diversity in timing of HRQoL data collection and applied statistical methods were noted. We observed a high rate of NR, but the impact of NR was investigated in only 8/23 studies. Thus, evidence-based knowledge of HRQoL in patients with MM is compromised. To improve quality of HRQoL results and their implementation in daily practice, future studies should follow established guidelines.

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KW - missing data

KW - multiple myeloma

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