TABLE 2.
Summary of results from Delphi surveys: components of self-management in pulmonary fibrosis
| Round 1 | Round 2 | Consensus status and changes made | |||
| Median | IQR | Median | IQR | ||
| Self-management components | |||||
| 1. Understanding PF | 5 | 1 | 5 | 1 | No consensus |
| 2. Understanding expected disease course and prognosis | 5 | 1 | 5 | 1 | No consensus |
| 3. Understanding treatment options for PF | 5 | 0 | Consensus achieved in R1 | ||
| 4. Understanding and accessing clinical trials | 4 | 0 | Consensus achieved in R1 | ||
| 5. Managing medications (including side-effects) | 5 | 0 | Consensus achieved in R1 | ||
| 6. Managing cough | 5 | 1 | 4 | 1 | No consensus |
| 7. Managing shortness of breath | 5 | 0 | Consensus achieved in R1 | ||
| 8. Managing fatigue | 4 | 1 | 4 | 0 | Consensus achieved in R2 |
| 9. Role and importance of pulmonary rehabilitation | 5 | 1 | 5 | 0 | Consensus achieved in R2 |
| 10. Role of oxygen therapy | 5 | 1 | 5 | 0 | Consensus achieved in R2 |
| 11. Managing oxygen therapy | 5 | 1 | 5 | 1 | No consensus |
| 12. Reducing the risk of an exacerbation | 4 | 1 | 4 | 1 | No consensus |
| 13. Using an action plan | 4 | 2 | 4 | 1 | No consensus |
| 14. Role and importance of regular physical activity | 5 | 1 | 5 | 1 | No consensus |
| 15. Nutrition and dietary advice | 4 | 1 | 4 | 1 | No consensus |
| 16. Smoking cessation advice and support | 5 | 1 | 5 | 0 | Consensus achieved in R2 |
| 17. Managing activities of daily living | 4 | 1 | 4 | 1 | No consensus |
| 18. Managing comorbid medical conditions | 4 | 0 | Consensus achieved in R1 | ||
| 19. Managing mood | 5 | 1 | 5 | 1 | No consensus |
| 20. Role and importance of social support | 4 | 1 | 4 | 1 | No consensus |
| 21. Accessing peer support | 4 | 1 | 4 | 1 | No consensus |
| 22. Accessing community support | 4 | 0 | Consensus achieved in R1 | ||
| 23. Advance care planning and advance directives | 4 | 1 | 5 | 1 | No consensus |
| 24. Accessing reliable information about PF | 5 | 1 | 4 | 1 | No consensus |
| 25. Vaccinations | 4 | 1 | 4 | 1 | “Role and importance” removed after R1 |
| 26. Recognising an exacerbation | 5 | 1 | 5 | 1 | “Managing” removed after R1 |
| Items added by HCPs in Round 1 | |||||
| 27. Preparation for a medical consultation | 4 | 1 | No consensus | ||
| 28. Monitoring and assessment of the disease | 4 | 1 | No consensus | ||
| 29. Awareness of potential noxious exposures | 4 | 1 | No consensus | ||
| 30. Managing pain | 3 | 1 | No consensus | ||
| 31. Managing sexual problems | 4 | 1 | No consensus | ||
| 32. Advice on travelling | 4 | 1 | No consensus | ||
| 33. How to communicate with others when living with PF | 4 | 0 | Consensus achieved in R2 | ||
| 34. Support for carers and family | 4 | 1 | No consensus | ||
| Items added/modified by patient focus group | |||||
| 35. Role and importance of pulmonary rehabilitation and regular physical activity | New item: 9 and 14 combined | ||||
| 36. Managing coexisting medical conditions | “Comorbid” changed to “coexisting” | ||||
Components that achieved a high level of consensus (i.e., IQR=0) are highlighted in orange colour. PF: pulmonary fibrosis; HCP: healthcare professional; IQR: interquartile range; R1: Delphi Round 1; R2: Delphi Round 2.