Summary of supportive care needs: practical/daily living and information/education domains

Needs domain and category Studies nIndividual reporting needRepresentative quotes
Practical/daily living#“He can't bend over. If he bends over, forget it. So I empty out the bottom of the dishwasher. He empties the top, because he likes to participate” (caregiver of patient with IPF) [13]
“Even showering becomes a problem; you do it in stages. And someone has to be here” (patient with IPF) [18]
“… just the inconvenience of it all (oxygen therapy) and the stupid line all over the house, and I trip on, because it's always – my leash, as my husband calls it” (patient with IPF using oxygen for 9–12 months) [26]
“If there was a plan, if we knew what was going on, then we could make decisions…. There are no standard procedures for end-of-life decision makers” (advocate) [15]
 Loss of independence/decreased ability to perform activities of daily living9
 Financial burden/loss of income7
 End-of-life planning (insufficient information/do not have a plan)7
 Requiring more time, planning and adaptation both inside and outside of home7
 Physical challenges of transporting oxygen6
 Given up hobbies6
 Concerns with oxygen limitation outside of home3
 Physical challenges of using oxygen at home3
 Disease progression and prognosis14“I am dissatisfied; the disease was not explained to me. I feel like people assumed I know, but in general it felt like you were left, like, in the corner” (non-IPF patient) [21]
“I remember searching on the Internet, and thinking, ‘I'll probably be dead next week.’ In the beginning, because you know so very little, it can be very frightening. It was so confusing” (patient with IPF) [31]
“They say you are like this and that's how you are going to end up like. And you think, what's going to happen in between?’ (patient with IPF) [34]
“[W]hen I went to see him a month or two back, he said, ‘Are you using your oxygen?’ I said, ‘No’. I said, ‘It's too bloody hard to connect’…. He said, ‘It's the easiest thing you can do. Why haven't you tried it?’ I said, ‘No one has told me how easy it is”’ (patient with IPF who had ceased antifibrotic therapy) [16]
“[I]t would be wonderful to have, once-a-month, a highlight on somebody who says “Yeah, I've been dealing with this for 11 years, this is what my life is like” instead of reading some statistic” (patient with IPF) [23]
“It is difficult for us to help them, we would like to have more information about what we should do at home” (caregiver of patient with IPF using pirfenidone) [8]
 Supplemental oxygen, including travel with oxygen13
 Pharmacological treatments11
 Planning for end-of-life11
 Coping strategies9
 Managing symptoms (breathlessness and cough)8
 Non-pharmacological treatments/ alternative therapies7/1
 Research and clinical trials7
 How to provide practical/emotional care for loved one with pulmonary fibrosis4/2
 Lung transplantation5
 Understanding tests used for diagnosis and monitoring4
 Treatment centres/referral to suitable specialists3
 Travelling with pulmonary fibrosis2
 How to recognise and deal with important signs and symptoms3
 Signs and symptoms of pulmonary fibrosis2
 Causes of pulmonary fibrosis2
 Managing comorbidities1
 Success stories of living with pulmonary fibrosis1
 Homecare/drug delivery1
 How to avoid infection1
 How to communicate with a frustrated/ angry/depressed patient1
 How doctors follow IPF over time1
 How to access community supports1

Shading indicate where supportive care need was identified by the patient and/or caregiver. IPF: idiopathic pulmonary fibrosis. #: n=18; : n=26.