The purpose of this study is to determine how diagnostic delay of CD affects the burden of CD to patients and society in terms of healthcare and mental healthcare utilisation and socioeconomic costs.
ID
Source
Brief title
Condition
- Malabsorption conditions
- Autoimmune disorders
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Quality Adjuste Life Years (QALY*s).
Secondary outcome
Secondary outcomes: Health care utilisation in Euros before and after
diagnosis, number and severity of medical symptoms and complications.
Predictors and mediators: Socioeconomic group.
Background summary
Despite the increased awareness of CD in society and in healthcare, there is
still a substantial delay from first symptoms to diagnosis of CD. Undiagnosed
patients with CD can be characterised as having poor HRQoL. HRQoL as an aspect
of living with CD has been studied frequently. Untreated CD is associated with
a variety of medical complications of which some are permanent or even fatal.
Despite this there are still few studies who have examined the burden of
disease in CD. The aim of the current study is to determine how diagnostic
delay of CD affects the burden of CD to patients and society in terms of
healthcare and mental healthcare utilisation and socioeconomic costs. In
addition we will examine differences in outcome between patients belonging to
different socioeconomic groups. We hope that this study will emphasize the fact
that policy should be made to avoid unnecessary delay in diagnosis of CD. And
that by shortening the diagnostic delay it may be possible to reduce the
unnecessary burden of disease.
Study objective
The purpose of this study is to determine how diagnostic delay of CD affects
the burden of CD to patients and society in terms of healthcare and mental
healthcare utilisation and socioeconomic costs.
Study design
The study design will be a cross-sectional population study, designed to
compare differences in quality of life and healthcare costs before and after
diagnosis of CD in terms of Quality Adjusted Life Years (QALY*s).
Study burden and risks
No adverse effects of this study are expected. Questionnaire and interview
completion involve an investment by the participant of approximately 1 hour
and 45 minutes. The measures and the interview format used in this study are
usually not experienced as stressful or burdensome.
Wassenaarseweg 52
Leiden 2333AK
NL
Wassenaarseweg 52
Leiden 2333AK
NL
Listed location countries
Age
Inclusion criteria
Dutch citizen
Dutch-speaking
Age >=18
Confirmed diagnosis of CD based on medical expertise
Exclusion criteria
For questionnaire section of the study:
Participants who are not able to fill out the questionnaires themselves (for example due to cognitive conditions);For interview section of the study:
Serious physical, psychiatric or cognitive conditions that could threaten the validity of the interview or make the interview impossible (for example; deafness, mental retardation, psychosis).
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL44374.058.13 |