Campaigns

Survey of mesothelioma patients

This British Lung Foundation survey has been developed for people with mesothelioma, their family members and people who have lost a loved one to the disease. We would be very grateful if you would take the time to fill out this survey and tell us about your experiences. This survey will help us to understand the needs of people who have been affected by mesothelioma. It will also form our campaigning messages for next year’s Action Mesothelioma Day.

Part A: Demographics
	The first few questions are about you and your experience of mesothelioma. Please select the most appropriate answer.
	1. Which of the following best describes your position? *
	I have mesothelioma I am a carer / partner of someone with mesothelioma I have been bereaved by mesothelioma
	2. Which region of the UK do you live in? *
	South East of England South West of England Midlands of England North East of England North West of England Wales Scotland Northern Ireland
	3. Are you male or female? *
	Male Female
	4. How long ago were you/the person you care(d) for diagnosed with mesothelioma? *
	In the last six months Six months to one year More than a year ago – please specify
	5. Do you know how you/ the person you care(d) for was exposed to asbestos? If so, please give details.

	Click 'Next' below to proceed to Section B

Part B: Your feelings
	This section is about your emotional reaction to the mesothelioma diagnosis.
	6. Since the diagnosis, how often do you feel/ have you felt anger? *
	Most of the time Sometimes Rarely Never
	7. Since the diagnosis, how often do you feel/ have you felt isolated/alone? *
	Most of the time Sometimes Rarely Never
	8. Since the diagnosis, how often do you feel/ have you felt despair/depression? *
	Most of the time Sometimes Rarely Never
	9. Since the diagnosis, how often do you feel/ have you felt fear? *
	Most of the time Sometimes Rarely Never
	10. Since the diagnosis, how often do you feel/ have you felt anxiety? *
	Most of the time Sometimes Rarely Never
	11. Since the diagnosis, how often do you feel/ have you felt peace/acceptance? *
	Most of the time Sometimes Rarely Never

Part C: Provision of support by healthcare professionals
	This section is about how supportive healthcare professionals are/were during the illness. There are a variety of ways in which healthcare professionals can provide help to people affected by mesothelioma. Some of them are listed below. Please select the most appropriate answer to indicate how well a healthcare professional has supported you in each section. For example, if you think the information provided by your healthcare professional was good, please circle ‘good’.
	12. Was professional healthcare professional support provided in relation to information about mesothelioma? *
	Yes No Not sure
	13. If yes, please rate the quality of the support provided.
	Good Average Poor
	14. Was professional healthcare professional support provided in relation to discussion about occupational history and asbestos exposure? *
	Yes No Not Sure
	15. If yes, please rate the quality of the support provided
	Good Average Poor
	16. Was professional healthcare professional support provided in relation to discussion about psychological needs and hopes and fears for the future? *
	Yes No Not Sure
	17. If yes, please rate the quality of the support provided
	Good Average Poor
	18. Was professional healthcare professional support provided in relation to information about treatment options? *
	Yes No Not Sure
	19. If yes, please rate the quality of the support provided
	Good Average Poor
	20. Was professional healthcare professional support provided in relation to information about benefits & compensation? *
	Yes No Not Sure
	21. If yes, please rate the quality of the support provided
	Good Average Poor
	22. Was professional healthcare professional support provided in relation to information about where to go for further advice, including out of hours NHS support? *
	Yes No Not Sure
	23. If yes, please rate the quality of the support provided
	Good Average Poor
	24. Was professional healthcare professional support provided in relation to information about how to control symptoms? *
	Yes No Not Sure
	25. If yes, please rate the quality of the support provided
	Good Average Poor
	26. Was professional healthcare professional support provided in relation to support for family and carers? *
	Yes No Not Sure
	27. If yes, please rate the quality of the support provided
	Good Average Poor
	28. Was professional healthcare professional support provided in relation to discussion about the needs of your dependents? *
	Yes No Not Sure
	29. If yes, please rate the quality of the support provided
	Good Average Poor
	30. Was professional healthcare professional support provided in relation to palliative care issues and end of life care? *
	Yes No Not Sure
	31. If yes, please rate the quality of the support provided
	Good Average Poor
	32. Have you had support from any other groups or organisations? *
	Yes No
	33. If yes which ones?

Part D: Healthcare provision
	This section is about how well your hospital cares for people affected by mesothelioma. It is quite possible that you will not know the answers to these questions. If you are aware of the situation, however, we would be interested to hear about your experiences. 'Multidisciplinary Teams' (MDTs) are groups of health professionals working together in teams to diagnose, treat and care for people with cancer in their specialist area. These questions cover any investigations carried out pre-diagnosis.
	34. Was a CT Scan carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	35. Was a PET Scan carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	36. Was an MRI Scan carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	37. Was a Bronchoscopy carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	38. Was a sample of fluid drained from your chest and sent for analysis before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	39. Were you given a needle biopsy whilst in the CT Scanner before a diagnosis of mesothelioma was made? *
	Yes No Don't know
	40. Were you given a needle biopsy whilst having an ultrasound before a diagnosis of mesothelioma was made? *
	Yes No Don't know
	41. Was a needle biopsy taken on the ward during a chest drain before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	42. Was a Thoracoscopy carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	43. Was a surgical biopsy with general anaesthetic carried out before a diagnosis of mesothelioma was made? *
	Yes No Not sure
	44. Did you feel well informed throughout the time investigations were being carried out and treatment was being given? *
	Yes No Not sure
	45. Was your case reviewed by a multidisciplinary team? *
	Yes No Not Sure
	46. If so, did you receive feedback from this review?
	Yes No Not Sure
	47. If problems or questions arose during investigations or treatment were you clear about who to contact at the hospital? *
	Yes No Not Sure
	48. Were you offered the chance to take part in a medical trial? *
	Yes No Not Sure
	49. Was surgery offered? *
	Yes No Not Sure
	50. Was chemotherapy offered? *
	Yes No Not Sure
	51. Once the investigations and initial treatment were completed were you clear about who to contact if you had questions or difficulties? *
	Yes No Not sure
	52. Do you have any beneficial comments about your experiences that you would like to share with us? If so, please enter in the box below. When you have finished, please click 'submit' below to submit your completed survey.