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Hereditary Haemorrhagic Telangiectasia (HHT) is a condition in which sufferers have abnormal blood vessels which makes them more likely to bleed than other people, particularly in the lungs, which results in low blood oxygen levels. Flying may make this worse and cause problems. The investigators want to know if there are an increased number of problems on flights compared to on land.
The investigators currently do not have any evidence based guidelines on air travel to best advice people who suffer with HHT. The investigators would therefore like to ask individuals who have HHT about their experience on a flight, using a postal questionnaire.
Individuals with Hereditary Haemorrhagic Telangiectasia (HHT) previously reviewed at HHTIC London will be sent an invitation to participate in a short questionnaire study.
Quantitative variables from the questionnaires for statistical analysis will be the number of individuals responding (and number of questionnaires sent out); number of flights taken and number of complications, subgrouped by type, and flight duration in hours. Complication rates will be expressed as proportion of person flight hours.
The quantitative data from the questionnaire will then be compared with quantitative data from patients' medical records using non parametric methods such as Mann Whitney for univariate analyses.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Pateints with hereditary haemorrhagic telangiectasia |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Aeroplane flight in the past- no active intervention for study | Other | Aeroplane flight(s) previously taken by study participants |
|
| Measure | Description | Time Frame |
|---|---|---|
| HHT Patients Who by the Questionnaire Did or Did Not Self Report a Medical Complication During Flight | Of all patients who were sent the questionnaire, this comparison was limited to those who had taken a flight, either long haul or short haul. Participants were compared as to whether they did or did not suffer a flight complication. | Patient were asked to report all flights taken up until questionnaire completion aged 18-90 (mean 55)ys. 145 HHT-affected respondents had flown for 18,943 hours over 3,950 flights. |
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Inclusion Criteria:
HHT
Exclusion Criteria:
Unable to provide informed consent
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HHT patients previously assesses at Hammersmith Hospital, England
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| Name | Affiliation | Role |
|---|---|---|
| Claire L Shovlin, PhD MA MB BChir FRCP | Imperial College London | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| HammersmithHospital, Imperial College Healthcare NHS Trust | London | W12 0NN | United Kingdom |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 21953065 | Result | Mason CG, Shovlin CL. Flight-related complications are infrequent in patients with hereditary haemorrhagic telangiectasia/pulmonary arteriovenous malformations, despite low oxygen saturations and anaemia. Thorax. 2012 Jan;67(1):80-1. doi: 10.1136/thoraxjnl-2011-201027. Epub 2011 Sep 26. |
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| ID | Title | Description |
|---|---|---|
| FG000 | Pateints With Hereditary Haemorrhagic Telangiectasia | Aeroplane flight in the past- no active intervention for study: Aeroplane flight(s) previously taken by study participants Questionnaire: Flight by aeroplane (previous) |
| Title | Milestones | Reasons Not Completed | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
|
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| ID | Title | Description |
|---|---|---|
| BG000 | Pateints With Hereditary Haemorrhagic Telangiectasia | Aeroplane flight in the past- no active intervention for study: Aeroplane flight(s) previously taken by study participants Questionnaire: Flight by aeroplane (previous) |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Categorical | Count of Participants |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | |||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | HHT Patients Who by the Questionnaire Did or Did Not Self Report a Medical Complication During Flight | Of all patients who were sent the questionnaire, this comparison was limited to those who had taken a flight, either long haul or short haul. Participants were compared as to whether they did or did not suffer a flight complication. | Percentage of individuals who reported complications | Posted | Number | 95% Confidence Interval | percentage of patients | Patient were asked to report all flights taken up until questionnaire completion aged 18-90 (mean 55)ys. 145 HHT-affected respondents had flown for 18,943 hours over 3,950 flights. |
|
6 weeks
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | Pateints With Hereditary Haemorrhagic Telangiectasia | Aeroplane flight in the past- no active intervention for study: Aeroplane flight(s) previously taken by study participants Questionnaire: Flight by aeroplane (previous) |
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| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Dr. Claire Shovlin, Principal Investigator | Imperial College London | +44 208 383 1178 | c.shovlin@imperial.ac.uk |
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| ID | Term |
|---|---|
| D013683 | Telangiectasia, Hereditary Hemorrhagic |
| ID | Term |
|---|---|
| D020141 | Hemostatic Disorders |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D013684 | Telangiectasis |
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| ID | Term |
|---|---|
| D011795 | Surveys and Questionnaires |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| Questionnaire | Other | Flight by aeroplane (previous) |
|
| Participants |
|
| Age, Continuous | Mean | Full Range | years |
|
| Sex: Female, Male | Count of Participants | Participants |
|
| Race and Ethnicity Not Collected | Race and Ethnicity were not collected from any participant. | Count of Participants | Participants |
|
| Region of Enrollment | Number | participants |
|
|
|
| 0 |
| 156 |
| 0 |
| 156 |
| 0 |
| 156 |
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| D006474 |
| Hemorrhagic Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
| D054079 | Vascular Malformations |
| D018376 | Cardiovascular Abnormalities |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |