TABLE 4

Summary of supportive care needs; health system/communication and access to care domains

Needs domain and category Studies nIndividual reporting needRepresentative quotes
PatientCaregiver
Health system/patient–clinician communication#“I was angry and upset; it took over 2 years to get a diagnosis and I felt none of the doctors cared” (patient with IPF) [1]
“I came in and saw the nurse and she knew more and understood more about my complaint than anyone I'd seen prior…. It gives you confidence” (patient with IPF) [28]
“I think they try to liaise between each other but it so often falls apart … there is really a short coming amongst getting information from one aspect of the medical profession to the other” (caregiver of patient with advanced IPF) [25]
“Their honesty in their conversation was huge as well. Being able to look my mom in the eye and tell her that she's dying and that she will be dead within the year. And then, taking the time to sit there and hold her hand and wait until she was ready to talk, and answer her questions, and let her know what that death was going to look like [pause] I think is also really big” (bereaved caregiver) [32]
 Benefits of specialist centres7
 More timely and accurate diagnosis7
 Honesty about what the future holds6
 Benefits of specialist pulmonary fibrosis nurses5
 Healthcare professionals to be better informed5
 Sensitivity in delivering diagnosis and prognosis –allowing enough time4
 Ongoing relationship with healthcare professionals3
 Coordination of care between healthcare professionals/shared care with local healthcare professionals2/1
 Encourage self-management2
 Timing of end-of-life conversations2
 Role for caregivers in consultation1
 Access to information at “touchpoints” between consultations1
 Understanding goals of therapy1
 Feedback from clinical trials1
 Adherence to palliative care guidance by healthcare professionals1
Access to care“… somebody that I could ask questions of; somebody who has been down that path, that, um, you know, that they would, would be available to, and willing, to talk about how do you do this or how do you do that” (patient with IPF using oxygen for 9–12 months) [26]
“The doctors helped me, but I have never received any psychological support, I really need it” (patient with IPF using pirfenidone) [8]
“Being able to speak to someone over the phone about my problems has been very reassuring, rather than having to wait until my next clinic visit” (patient with IPF using pirfenidone) [7]

“I can't get a lung transplant because I'm too old. I've just accepted it” (patient with IPF using antifibrotic therapy) [16]
“They also said there were treatments that were not available in Spain yet. I even asked her [the doctor] if we could get it, and she told us it was impossible… Those 2 years we were missing [out on treatment]… We could do nothing about it, there were parameters [to qualify for treatment]” (patient with IPF) [31]
 Support groups/peer support12
 Emotional/psychological support8
 Specialist centres8
 Support/care for family6
 Pharmacological treatment6
 More effective treatments5
 Specialist nurse5
 Lung transplantation4
 Palliative care, including death at home4
 Pulmonary rehabilitation/maintenance pulmonary rehabilitation programmes in community (led by pulmonary fibrosis specialist)3/1
 Multidisciplinary teams4
 Pulmonology specialists4
 Home modification/adaptation3
 Supplemental oxygen3
 End-of-life counselling3
 Specialist visits2
 Diagnostic tests2
 Advocacy group1
 Clinical trial1

Shading indicates where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=22; : n=27.