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Pulmonary Fibrosis questionnaire - December 2025

Welcome and Thank You for Taking Part

Thank you for taking the time to complete this questionnaire. Your responses will help us better understand the experiences, challenges, and needs of people living with pulmonary fibrosis. The survey is divided into five short sections and should take no more than 10 minutes to complete. All answers will remain confidential and will be used only for research purposes.

Your input is greatly appreciated.
Section 1: Oxygen Use & Daily Life
1.Are you currently using supplemental oxygen?
2.When did you start using oxygen in your disease journey?
3.Have you ever been prescribed oxygen as a one-off?
4.How has oxygen use affected your ability to carry out daily activities (e.g., cooking, walking, household tasks)?
5.Do you feel oxygen use limits your ability to go out socially or travel?
6.Have you experienced any stigma or emotional discomfort related to using oxygen in public?
7.How do you manage oxygen use when outside the home? What challenges do you face?
8.Do you use oxygen at night?
9.Have you been prescribed CPAP or another sleep support device?
10.Have you noticed changes in your energy levels or daytime functioning since starting oxygen or CPAP therapy?
Section 2: Daily Support Needs
11.Do you need help with any of the following daily activities? (Select all that apply)
12.How often do you rely on a caregiver for daily tasks?
Section 3: Anti-Fibrotic Treatment Experience
13.Are you currently taking anti-fibrotic medication?
14.What side effects have you experienced, if any, and how have they impacted your daily life?
15.Have you ever considered stopping treatment due to tolerability issues?
16.Do you feel well-informed and supported in managing side effects?
Section 4: Mental Health & Emotional Wellbeing
17.How has your diagnosis of IPF or PPF affected your mental health?
18.Do you experience feelings of anxiety, depression, or isolation related to your condition?
19.Which aspects of the disease have the biggest impact on your mental and physical health?
20.What kind of emotional support do you currently have (e.g., family, support groups, healthcare professionals)?
21.What would help you feel more supported in managing the emotional impact of your condition?
22.Have there been any financial implications related to your diagnosis?
23.What is the single biggest challenge you face living with pulmonary fibrosis?
Section 5: For Caregivers (if applicable)
24.What impact has the diagnosis had on you personally?
25.How has it affected your emotional wellbeing, ability to work, or social activities?
26.What aspect of the condition is most challenging or burdensome for you?
27.Have there been any financial implications for you as a caregiver?
28.What additional costs have you incurred to better cope or manage the condition?
29.Have you ever considered or obtained treatment or specialist services privately (i.e., outside the NHS)? If so, please describe.