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

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.

Keywords:

• survey design
• cross-sectional survey
• nationwide survey
• patient-reported outcomes
• health-related quality of life
• myeloproliferative neoplasms

Acknowledgments

We thank the participants in this survey. Also, we would like to thank Karin Engel Rasmussen for putting together the question booklet and Danish Telemedicine A/S for programming the survey website.

The Einar Willumsen Foundation, the Frimodt-Heineke Foundation, and the Health Science Research Foundation of Region Zealand supported this work.

Author contributions

ADZ, NB, HCH, KJ, EMF, and CLA conceptualized and designed the survey. NB organized the survey, along with AIC and ADZ. EMF provided the statistical analyses. All authors contributed toward data analyses. NB drafted the manuscript. All authors participated in the revision and final approval of the manuscript. All authors agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.