Research
Survey and research
We are gathering patient-reported experiences to understand routes to diagnosis, recurring chest symptoms, access to specialist care, and the impact of thoracic endometriosis symptoms.
Before you take part
Please read the participant information below. The survey opens on a separate page that includes the consent statements, privacy information and our aims for the questionnaire.
Why we are doing this
Patient-reported data can help show where recognition is delayed, information is fragmented or access differs. The aim is to identify patterns and gaps that can inform advocacy, service improvement and future research.
What participation involves
The survey may ask about symptoms, confirmed pneumothorax or other chest events, diagnoses, investigations, operations, referrals and treatment experiences. You can see the questions before deciding whether to begin.
Possible discomfort
Some questions may bring back difficult memories of pain, emergency treatment, delayed diagnosis or feeling unheard. You may stop before submitting, and your data will not be included.
Benefits and limits
You may not receive any direct personal benefit. Your response may contribute to a better understanding of patient experience and support future advocacy. Taking part will not provide a diagnosis, clinical advice, treatment or referral.
How findings will be used
We plan to analyse responses in aggregate and may publish reports, create presentations and campaign on social media for awareness raising. No individual responses will be shared.
Questions about the study
Contact [email protected].