The purpose of this study is to find out which common problems occur in the HME patient population. Furthermore the study will investigate which factors are associated with the observed problems. This is barely investigated in the current literature…
ID
Source
Brief title
Condition
- Musculoskeletal and connective tissue disorders congenital
- Skeletal neoplasms benign
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Quality of live scores, painscores, fatiguescores, activitylevels, mental
well-being scores.
Secondary outcome
Factors that are associated with the primary study parameters, such as: age,
seks, age of first surgery, amount of surgeries, education level, marital
status, employment status.
Background summary
Multiple Hereditary Exostosis (MHE) is a rare autosomal inherited skeletal
disorder characterized by the presence of numerous bony outgrowths, also called
osteochondromas. These osteochondromas can in some cases transform into
chondrosarcomas. MHE manifests at a young age and gives a lot of different
complications where in most cases surgery is needed. MHE affects the young and
the old, therefore it is of great importance to perform this study on the total
patient group. Up till now a lot of research focuses on the surgical treatment.
Little attention has been paid to the effects of MHE on the physical and
psychosocial well-being of the patients.
Study objective
The purpose of this study is to find out which common problems occur in the HME
patient population. Furthermore the study will investigate which factors are
associated with the observed problems. This is barely investigated in the
current literature. With the findings of this study, we will be a step closer
to developing treatment plans that cover the overall well-being of HME
patients.
Study design
Study design: This is an observational study using an online survey. Patients
with MHE will be informed about this study at the orthopedic outpatient clinic
of the OLVG. The National Patient Association will also display information
about this study on their website. In case of interest and after informed
consent/assent is given, the patients will receive an email with a secured link
which will give them acces to the survey. The questionnaires on the survey
include 5 categories which are age-dependent: fatigue, pain, quality of life,
activity level, mental well-being. The survey will take 18-78 minutes to
complete. The survey can be completed on different computers, at various time
points, and at participants own pace as data will be saved automatically
Study burden and risks
There are no risks associated with this study. The only burden for this study
is the time invested in completing the questionnaires, 18-78 min. However due
to are design of the survey this burden can be alleviated because it is
possible for the subject to pause the questionnaire and complete it at another
time in their own pace. Furthermore, the patients can fill in the survey in the
comfort of their own homes.
Oosterpark 9 Oosterpark 9
Amsterdam 1091AC
NL
Oosterpark 9 Oosterpark 9
Amsterdam 1091AC
NL
Listed location countries
Age
Inclusion criteria
Individuals with multiple hereditary exostosis (MHE).
Individuals with MHE between 4 untill 17 years old.
Exclusion criteria
Individuals under the age of 4 years or older than 17 years.
Individuals who do not speak Dutch
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 | NL62341.100.17 |