The development and first results of a health-related outcomes set in familial hypercholesterolemia (FH) patients: Knowledge is health

Familial hypercholesterolemia (FH) is the most common hereditary lipid disorder requiring life-long treatment to prevent cardiovascular disease. A recent concept in healthcare is not only to focus on outcomes defined by healthcare professionals, but also take Patient-Reported Outcomes Measures (PROM...

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Bibliographic Details
Published in:Atherosclerosis 2020-01, Vol.293, p.11-17
Main Authors: Mulder, Janneke W.C.M., Galema-Boers, Annette M.H., de Jong-Verweij, Lisanne M., Hazelzet, Jan A., Roeters van Lennep, Jeanine E.
Format: Article
Language:English
Subjects:
Adult
Anticholesteremic Agents - therapeutic use
Cardiovascular disease
Cholesterol, LDL - blood
Familial hypercholesterolemia
Female
Health Knowledge, Attitudes, Practice
Health Status
Humans
Hyperlipoproteinemia Type II - blood
Hyperlipoproteinemia Type II - drug therapy
Male
Medication Adherence
Middle Aged
Patient-reported outcome measures
Prevention
Quality of Life
Retrospective Studies
Risk Factors
Surveys and Questionnaires
Treatment Outcome
Value-based health care
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Summary:Familial hypercholesterolemia (FH) is the most common hereditary lipid disorder requiring life-long treatment to prevent cardiovascular disease. A recent concept in healthcare is not only to focus on outcomes defined by healthcare professionals, but also take Patient-Reported Outcomes Measures (PROMs) into account. The aim of this study is (1) to describe the development and first results of a health-related outcomes set including PROMs for FH patients and (2) investigate the influence of patient knowledge on health-related outcomes. A multidisciplinary group of FH experts, in collaboration with a sounding board of FH patients (n = 166), developed a health-related outcomes set containing the domains: medication adherence (MARS-5), smoking, self-efficacy and self-management, quality of life (QOL) (EQ-5D-5L), reported adverse drug reactions, lipid outcome measures, and FH and cardiovascular risk factor knowledge. Knowledge scores ranged from 0 to 10. Two groups were created: Insufficient knowledge (INSUF) (
ISSN:0021-9150
1879-1484
DOI:10.1016/j.atherosclerosis.2019.11.030