| Respect for patient-centred values
| Recalibrating quality of life and wanting feedback on PROMs data; impact of breathlessness on independence; the need to talk and the need not to talk to be respected |
| Coordination and integration of care
| Challenges of managing other health issues and lack of social/fiscal support – administrative processes often a barrier |
| Information, communication and education
| The need to talk to others affected with IPF; more information at the beginning; to understand choices in healthcare; information customised to specific needs |
| Physical comfort
| Impact on activities of daily life and how to physically manage these – support with transitions to oxygen therapy; need for effective symptom relief |
| Emotional support
| Better access to psychological/counselling services for self and caregivers. Value having telephone support; healthcare professionals responding promptly to requests for advice. Wanting and not wanting to know prognosis |
| Involvement of family and friends
| Family may have different information needs – respecting patient’s wishes – support for wives’; husband’s; partners often lacking – guilt associated with burden of caring |
| Transition and continuity
| Do not want to be abandoned at end of life – feel better supported by clinicians known at diagnosis. Value copies of correspondence. Value having a key contact – particularly specialist nurse |
| Access to care
| Having a progressive condition makes waiting to be seen by a specialist centre or for transplant assessment stressful. Travel presents challenges: dichotomy of wanting care close to home but with specialist input; too many health care appointments |