Abstract
Many attempted to develop burden of disease rankings for the purpose of resource allocation, priority setting, cost-effectiveness evaluation, and service development in healthcare. As this proved difficult the World Health Organization commissioned expert panels to develop internally consistent burden of disease rankings. Although these rankings provide valuable insight in the biomedical burden of different diseases, they do not yet provide insight in the psychological burden of different diseases experienced and reported by patients on a daily basis. Since expert reported and patient reported burden of disease could differ, deviations between expert reported and patient reported burden of disease rankings are likely. To explore how these rankings differ, it is important to develop patient reported burden of disease rankings and compare these to expert reported burden of disease rankings. In this study patient reported burden of disease rankings were developed by ranking the subjective health experience of patients. To measure subjective health experience an online questionnaire was administered to a large panel of Dutch citizens. The final sample consisted of 58,490 panel members. This final sample contained 36 diseases and was largely representative of the Dutch population. The data were analysed by using reliability tests, descriptive statistics and Spearman rank-order correlation coefficients. This study shows that expert reported and patient reported burden of disease rankings could differ. Burden of cardiovascular diseases ranks low on patient reported burden of disease rankings, while it ranks higher on expert reported burden of disease rankings. Burden of psychiatric diseases and gastrointestinal diseases ranks high on patient reported burden of disease rankings, while it ranks lower on expert reported burden of disease rankings. Burden of pain diseases ranks high on patient reported burden of disease rankings, while it is still overlooked in expert reported burden of disease rankings. This study suggests that it can be beneficial to develop and utilize patient reported burden of disease rankings in addition to the already existing expert reported burden of disease rankings in order to establish a more comprehensive perspective on burden of disease. This could improve decision-making on resource allocation, priority setting, cost-effectiveness evaluation, and service development in healthcare.
Highlights
- patients are able to internalize their health situation, but often attribute control over their life externally
This study addresses three main research questions: (a) How is the burden of different diseases ranked by patients without comorbidities, (b) How is the burden of different diseases ranked by patients with and without comorbidities, and (c) How do these patient reported burden of disease rankings compare to the usual expert reported burden of disease rankings
This study shows that burden of cardiovascular diseases ranks high (2) on the expert reported burden of disease ranking
Summary
- patients are able to internalize their health situation, but often attribute control over their life externally. Need - for planning and structure (they are willing to change but lack the capacity to overview and realize changes). Experience - patients are unable to accept their health condition and are unable or unwilling to gain control over their own health. Characteristics - predominantly female, low level of education, low income, low social class, low in ‘home ownership’. - patients are able to come to terms with their health condition and attempt to manage it Characteristics - relatively young, high level of education, high social class, high income, not religious
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