Table 2

Stage 1 – overarching themes identified from the responses to the stage 1 questionnaire (n=560)

Overarching themesNumber of questions incorporated into final theme% of respondents for final themes
(1) Quicker/better/more certain diagnosisearly detection, better prognosis 444%
(2) Better treatmentsfewer side effects, reduce disease progression, prolong life, lung transplant eligibility and post-transplant medications 640%
(3) Understand the cause of PF – family history, occupation, exposures, mechanism 439%
(4) Improve education / information / awarenessreduce stigma, understand experience of living with PF 535%
(5) Relieve symptomsbreathlessness, cough, fatigue 529%
(6) Find a cure for PF – provide hope for those with disease 124%
(7) Better supportive careoptimal exercise and rehab programmes, oxygen therapy, diet, end of life planning and care 619%
(8) Psychosocial support for patients and carers– awareness of support groups and where to seek assistance 616%
(9) Improve self-managementempower individual to deal with disease 612%
(10) Improve quality of life for patients and carers – ability to perform basic tasks, dependency on carers 28%
(11) Access to research and clinical trialsaccess to trials, information on research 38%
(12) Better access to care, especially in rural/regional areas – need to travel long distances for care, impact on patient and carers 26%
(13) Understand my prognosis – stages of progression, life expectancy, what to expect 23%
(14) Decrease costs of care – long-term use of oxygen expensive 11%
  • PF, pulmonary fibrosis.