Hereditary Haemorrhagic Telangiectasia
Conditions
Keywords
Previous flight by aeroplane
Brief summary
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.
Detailed description
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.
Interventions
OTHERAeroplane flight in the past- no active intervention for study
Aeroplane flight(s) previously taken by study participants
OTHERQuestionnaire
Flight by aeroplane (previous)
Sponsors
Imperial College London
Study design
Observational model
OTHER
Time perspective
RETROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
16 Years to 100 Years
Healthy volunteers
No
Inclusion criteria
HHT
Exclusion criteria
Unable to provide informed consent
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| HHT Patients Who by the Questionnaire Did or Did Not Self Report a Medical Complication During Flight | 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. | 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. |
Countries
United Kingdom
Participant flow
Participants by arm
| Arm | Count |
|---|---|
| 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) | 156 |
| Total | 156 |
Baseline characteristics
| Characteristic | Pateints With Hereditary Haemorrhagic Telangiectasia | — |
|---|---|---|
| Age, Categorical <=18 years | 0 Participants | — |
| Age, Categorical >=65 years | 53 Participants | — |
| Age, Categorical Between 18 and 65 years | 103 Participants | — |
| Age, Continuous | 55 years | — |
| Race and Ethnicity Not Collected | — | — Participants |
| Region of Enrollment United Kingdom | 156 participants | — |
| Sex: Female, Male Female | 96 Participants | — |
| Sex: Female, Male Male | 60 Participants | — |
Adverse events
| Event type | EG000 affected / at risk |
|---|---|
| deaths Total, all-cause mortality | 0 / 156 |
| other Total, other adverse events | 0 / 156 |
| serious Total, serious adverse events | 0 / 156 |
Outcome results
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.
Time frame: 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.
Population: Percentage of individuals who reported complications
| Arm | Measure | Value (NUMBER) |
|---|---|---|
| HHT Flight Group | HHT Patients Who by the Questionnaire Did or Did Not Self Report a Medical Complication During Flight | 77 percentage of patients |