Currently, Previously and
Never with suitable user-friendly wording. See the
introduction
for more information and alternative ways to collect this item.
Specifies whether the individual is currently using or has ever used invasive ventilation due to their neuromuscular condition over a period of two weeks or more. If the value is Currently, Previously, or Sometime, one or more instances of the record Invasive ventilation episode should be provided to specify details.
Invasive ventilation (IV) is surgery that creates an opening in the windpipe which allows breathing through a tracheostomy tube rather than through the nose and mouth.
| Item type: | single selection |
| Related items in previous version: | 10.00 |
| Usage in other datasets: | DMDLGMD |
In version 2.0, the structure of the item was changed.
In version 2.1, it was clarified that this item and the following record Invasive ventilation episode apply only to ventilation use due to the individual's neuromuscular condition.
This is an episode record: For each record instance, the following dates must be captured:
Start date: The month and year when the condition
described by the record started to hold, if known
Stop date: The month and year when the condition
ceased to hold, if applicable and known
Ongoing date: The month and year on which the
condition was known to hold, if applicable
See the introduction for more information.
Episode that describes current or previous usage of invasive ventilation due to the individual's neuromuscular condition. Only periods of two weeks or more are to be added.
| Related items in previous version: | 10.00, 10.02 |
| Item type: | single selection |
| Related items in previous version: | 10.01 |
| Usage in other datasets: | DMDDMDLGMDLGMD |
Currently, Previously and
Never with suitable user-friendly wording. See the
introduction
for more information and alternative ways to collect this item.
Specifies whether the individual is currently using or has ever used non-invasive ventilation due to their neuromuscular condition over a period of two weeks or more. If the value is Currently, Previously, or Sometime, one or more instances of the record Non-invasive ventilation episode should be provided to specify details.
Non-invasive ventilation (NIV) uses airway support which is administered through a nose or face mask.
| Item type: | single selection |
| Related items in previous version: | 10.03 |
| Usage in other datasets: | DMDLGMD |
In version 2.1, it was clarified that this item and the following record Non-invasive ventilation episode apply only to ventilation use due to the individual's neuromuscular condition.
This is an episode record: For each record instance, the following dates must be captured:
Start date: The month and year when the condition
described by the record started to hold, if known
Stop date: The month and year when the condition
ceased to hold, if applicable and known
Ongoing date: The month and year on which the
condition was known to hold, if applicable
See the introduction for more information.
Episode that describes current or previous usage of non-invasive ventilation due to the individual's neuromuscular condition. Only periods of two weeks or more are to be added.
| Related items in previous version: | 10.03, 10.05 |
| Item type: | single selection |
| Related items in previous version: | 10.04 |
| Usage in other datasets: | DMDDMDLGMDLGMD |
Specifies how often the individual currently uses assistance in airway clearance and/or secretion mobilisation, for example using suction, chest percussion or a cough assist device.
| Item type: | single selection |
| Related items in previous version: | 10.06, 10.07, 10.08, 10.09, 10.10, 10.11 |
| Usage in other datasets: | DMD |
In version 2.0, the type of assistance was removed from the dataset.
Specifies whether the individual has ever had a pulmonary function test. If one or more tests have been performed, the results are to be provided in instances of the record Pulmonary function test result.
| Item type: | yes/no |
| Related items in previous version: | 10.12 |
In version 2.0, this item was changed to apply to any pulmonary function test and not only to a forced vital capacity test because of the addition of the item Peak cough flow.
At baseline, the result of the most recent test must be collected; at updates, the result of every test since the previous update must be collected. For clinician-reported registries, the date of the test or date of the report as well as the values for FVC and PCF must be collected, whereas for patient-reported registries it is sufficient to collect the date of the test or report.
Since version 2.1, this record is no longer longitudinal and the item Pulmonary function test date was added instead.