A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents

Nana Brochmann; Esben Meulengracht Flachs; Anne Illemann Christensen; Christen Lykkegaard Andersen; Knud Juel; Hans Carl Hasselbalch; Ann-Dorthe Zwisler

doi:10.2147/CLEP.S117587

A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents

Nana Brochmann, Esben Meulengracht Flachs, Anne Illemann Christensen, Christen Lykkegaard Andersen, Knud Juel, Hans Carl Hasselbalch, Ann-Dorthe Zwisler

Department of Clinical Medicine

7 Citations (Scopus)

59 Downloads (Pure)

Abstract

OBJECTIVE: The Department of Hematology, Zealand University Hospital, Denmark, and the National Institute of Public Health, University of Southern Denmark, created the first nationwide, population-based, and the most comprehensive cross-sectional health-related quality of life (HRQoL) survey of patients with myeloproliferative neoplasms (MPNs). In Denmark, all MPN patients are treated in public hospitals and treatments received are free of charge for these patients. Therefore, MPN patients receive the best available treatment to the extent of its suitability for them and if they wish to receive the treatment. The aims of this article are to describe the survey design and the characteristics of respondents and nonrespondents.

MATERIAL AND METHODS: Individuals with MPN diagnoses registered in the Danish National Patient Register (NPR) were invited to participate. The registers of the Danish Civil Registration System and Statistics Denmark provided information regarding demographics. The survey contained 120 questions: validated patient-reported outcome (PRO) questionnaires and additional questions addressing lifestyle.

RESULTS: A total of 4,704 individuals were registered with MPN diagnoses in the NPR of whom 4,236 were eligible for participation and 2,613 (62%) responded. Overall, the respondents covered the broad spectrum of MPN patients, but patients 70-79 years old, living with someone, of a Danish/Western ethnicity, and with a higher level of education exhibited the highest response rate.

CONCLUSION: A nationwide, population-based, and comprehensive HRQoL survey of MPN patients in Denmark was undertaken (MPNhealthSurvey). We believe that the respondents broadly represent the MPN population in Denmark. However, the differences between respondents and nonrespondents have to be taken into consideration when examining PROs from the respondents. The results of the investigation of the respondents' HRQoL in this survey will follow in future articles.

Original language	English
Journal	Clinical Epidemiology
Volume	9
Pages (from-to)	141-150
ISSN	1179-1349
DOIs	https://doi.org/10.2147/CLEP.S117587
Publication status	Published - 2 Mar 2017

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Brochmann, N., Flachs, E. M., Christensen, A. I., Andersen, C. L., Juel, K., Hasselbalch, H. C., & Zwisler, A.-D. (2017). A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents. Clinical Epidemiology, 9, 141-150. https://doi.org/10.2147/CLEP.S117587

A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents. / Brochmann, Nana; Flachs, Esben Meulengracht; Christensen, Anne Illemann et al.
In: Clinical Epidemiology, Vol. 9, 02.03.2017, p. 141-150.

Research output: Contribution to journal › Journal article › Research › peer-review

Brochmann, N, Flachs, EM, Christensen, AI, Andersen, CL, Juel, K, Hasselbalch, HC & Zwisler, A-D 2017, 'A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents', Clinical Epidemiology, vol. 9, pp. 141-150. https://doi.org/10.2147/CLEP.S117587

Brochmann N, Flachs EM, Christensen AI, Andersen CL, Juel K, Hasselbalch HC et al. A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey): survey design and characteristics of respondents and nonrespondents. Clinical Epidemiology. 2017 Mar 2;9:141-150. doi: 10.2147/CLEP.S117587

Brochmann, Nana ; Flachs, Esben Meulengracht ; Christensen, Anne Illemann et al. / A nationwide population-based cross-sectional survey of health-related quality of life in patients with myeloproliferative neoplasms in Denmark (MPNhealthSurvey) : survey design and characteristics of respondents and nonrespondents. In: Clinical Epidemiology. 2017 ; Vol. 9. pp. 141-150.

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abstract = "OBJECTIVE: The Department of Hematology, Zealand University Hospital, Denmark, and the National Institute of Public Health, University of Southern Denmark, created the first nationwide, population-based, and the most comprehensive cross-sectional health-related quality of life (HRQoL) survey of patients with myeloproliferative neoplasms (MPNs). In Denmark, all MPN patients are treated in public hospitals and treatments received are free of charge for these patients. Therefore, MPN patients receive the best available treatment to the extent of its suitability for them and if they wish to receive the treatment. The aims of this article are to describe the survey design and the characteristics of respondents and nonrespondents.MATERIAL AND METHODS: Individuals with MPN diagnoses registered in the Danish National Patient Register (NPR) were invited to participate. The registers of the Danish Civil Registration System and Statistics Denmark provided information regarding demographics. The survey contained 120 questions: validated patient-reported outcome (PRO) questionnaires and additional questions addressing lifestyle.RESULTS: A total of 4,704 individuals were registered with MPN diagnoses in the NPR of whom 4,236 were eligible for participation and 2,613 (62%) responded. Overall, the respondents covered the broad spectrum of MPN patients, but patients 70-79 years old, living with someone, of a Danish/Western ethnicity, and with a higher level of education exhibited the highest response rate.CONCLUSION: A nationwide, population-based, and comprehensive HRQoL survey of MPN patients in Denmark was undertaken (MPNhealthSurvey). We believe that the respondents broadly represent the MPN population in Denmark. However, the differences between respondents and nonrespondents have to be taken into consideration when examining PROs from the respondents. The results of the investigation of the respondents' HRQoL in this survey will follow in future articles.",

author = "Nana Brochmann and Flachs, {Esben Meulengracht} and Christensen, {Anne Illemann} and Andersen, {Christen Lykkegaard} and Knud Juel and Hasselbalch, {Hans Carl} and Ann-Dorthe Zwisler",

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AU - Flachs, Esben Meulengracht

AU - Christensen, Anne Illemann

AU - Andersen, Christen Lykkegaard

AU - Juel, Knud

AU - Hasselbalch, Hans Carl

AU - Zwisler, Ann-Dorthe

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N2 - OBJECTIVE: The Department of Hematology, Zealand University Hospital, Denmark, and the National Institute of Public Health, University of Southern Denmark, created the first nationwide, population-based, and the most comprehensive cross-sectional health-related quality of life (HRQoL) survey of patients with myeloproliferative neoplasms (MPNs). In Denmark, all MPN patients are treated in public hospitals and treatments received are free of charge for these patients. Therefore, MPN patients receive the best available treatment to the extent of its suitability for them and if they wish to receive the treatment. The aims of this article are to describe the survey design and the characteristics of respondents and nonrespondents.MATERIAL AND METHODS: Individuals with MPN diagnoses registered in the Danish National Patient Register (NPR) were invited to participate. The registers of the Danish Civil Registration System and Statistics Denmark provided information regarding demographics. The survey contained 120 questions: validated patient-reported outcome (PRO) questionnaires and additional questions addressing lifestyle.RESULTS: A total of 4,704 individuals were registered with MPN diagnoses in the NPR of whom 4,236 were eligible for participation and 2,613 (62%) responded. Overall, the respondents covered the broad spectrum of MPN patients, but patients 70-79 years old, living with someone, of a Danish/Western ethnicity, and with a higher level of education exhibited the highest response rate.CONCLUSION: A nationwide, population-based, and comprehensive HRQoL survey of MPN patients in Denmark was undertaken (MPNhealthSurvey). We believe that the respondents broadly represent the MPN population in Denmark. However, the differences between respondents and nonrespondents have to be taken into consideration when examining PROs from the respondents. The results of the investigation of the respondents' HRQoL in this survey will follow in future articles.

AB - OBJECTIVE: The Department of Hematology, Zealand University Hospital, Denmark, and the National Institute of Public Health, University of Southern Denmark, created the first nationwide, population-based, and the most comprehensive cross-sectional health-related quality of life (HRQoL) survey of patients with myeloproliferative neoplasms (MPNs). In Denmark, all MPN patients are treated in public hospitals and treatments received are free of charge for these patients. Therefore, MPN patients receive the best available treatment to the extent of its suitability for them and if they wish to receive the treatment. The aims of this article are to describe the survey design and the characteristics of respondents and nonrespondents.MATERIAL AND METHODS: Individuals with MPN diagnoses registered in the Danish National Patient Register (NPR) were invited to participate. The registers of the Danish Civil Registration System and Statistics Denmark provided information regarding demographics. The survey contained 120 questions: validated patient-reported outcome (PRO) questionnaires and additional questions addressing lifestyle.RESULTS: A total of 4,704 individuals were registered with MPN diagnoses in the NPR of whom 4,236 were eligible for participation and 2,613 (62%) responded. Overall, the respondents covered the broad spectrum of MPN patients, but patients 70-79 years old, living with someone, of a Danish/Western ethnicity, and with a higher level of education exhibited the highest response rate.CONCLUSION: A nationwide, population-based, and comprehensive HRQoL survey of MPN patients in Denmark was undertaken (MPNhealthSurvey). We believe that the respondents broadly represent the MPN population in Denmark. However, the differences between respondents and nonrespondents have to be taken into consideration when examining PROs from the respondents. The results of the investigation of the respondents' HRQoL in this survey will follow in future articles.

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JO - Clinical Epidemiology

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