Figures
- FIGURE 1
Geographical percentage distribution of survey respondents by continent.
Tables
- TABLE 1
Physical symptoms and psychological experiences of lymphangioleiomyomatosis
Primary physical symptoms Common psychological experiences Shortness of breath
Low energy (or fatigue)
Cough
Sensations in the chestFrustration
Worry
Loss of identity
Embarrassment or guilt
Healthy defiance against the diseaseTwo of the physical symptoms described were present for all participants in the study: shortness of breath and low energy. Although less commonly mentioned, cough was also present in many participants as well as a sensation of heaviness or aching in the chest. The psychological experiences listed are those that were most commonly described by participants.
- TABLE 2
Top 10 priorities from the lymphangioleiomyomatosis (LAM) survey
1) Improving methods of identifying patients with active disease 81% 2) Availability of drugs for LAM in all EU countries 81% 3) All patients can access a specialist LAM centre 81% 4) Lung transplants should be available to more patients and with shorter waiting times 79% 5) Improving noninvasive diagnosis 78% 6) Patients can access treatments such as low-dose sirolimus/everolimus 77% 7) Improving care for patients in nonspecialist hospitals/services 77% 8) Opportunity for patients to hear about and participate in clinical trials 75% 9) Improving diagnostic biomarkers so that diagnosis is faster and more definitive 75% 10) Development of a European-wide organ donor service 73% Priorities are listed in descending order of importance. EU: European Union.
- TABLE 3
Patient research priority areas
Diagnosis How to develop better, noninvasive methods for the early diagnosis of LAM Progression How to develop better information about the likely progression of LAM, perhaps through biomarkers How does oestrogen affect LAM? An analysis of complications associated with the condition such as gynaecological complications Do lymphatics play a role in improved survival? Drug treatment How effective is sirolimus as a preventative drug? An analysis of the ovarian toxicity of drugs Why do some individuals develop resistance or do not respond to treatment? LAM: lymphangioleiomyomatosis.
Supplementary material
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Files in this Data Supplement:
- Table S1 - Statements shown in priority order with rating score shown
