Overarching themes | Number of questions incorporated into final theme | % of respondents for final themes (n=196) |
(1) Quicker/better/more certain diagnosis – early detection, better prognosis | 4 | 44% |
(2) Better treatments – fewer side effects, reduce disease progression, prolong life, lung transplant eligibility and post-transplant medications | 6 | 40% |
(3) Understand the cause of PF – family history, occupation, exposures, mechanism | 4 | 39% |
(4) Improve education / information / awareness – reduce stigma, understand experience of living with PF | 5 | 35% |
(5) Relieve symptoms – breathlessness, cough, fatigue | 5 | 29% |
(6) Find a cure for PF – provide hope for those with disease | 1 | 24% |
(7) Better supportive care – optimal exercise and rehab programmes, oxygen therapy, diet, end of life planning and care | 6 | 19% |
(8) Psychosocial support for patients and carers– awareness of support groups and where to seek assistance | 6 | 16% |
(9) Improve self-management – empower individual to deal with disease | 6 | 12% |
(10) Improve quality of life for patients and carers – ability to perform basic tasks, dependency on carers | 2 | 8% |
(11) Access to research and clinical trials – access to trials, information on research | 3 | 8% |
(12) Better access to care, especially in rural/regional areas – need to travel long distances for care, impact on patient and carers | 2 | 6% |
(13) Understand my prognosis – stages of progression, life expectancy, what to expect | 2 | 3% |
(14) Decrease costs of care – long-term use of oxygen expensive | 1 | 1% |
PF, pulmonary fibrosis.