Table 2

Summary of major topics and exemplary quotes

Major topicSubtopicsExemplary quote
Usefulness of HRQOL informationBenefits of capturing population level HRQOL data“It would allow more sort of psychosocial projects to happen because we’ve got a better overall view of what’s impacted people. And at the moment we don’t really have that data stored at all. And also maybe correlations between the hard numbers and the way people are feeling.” (Caregiver 6)
Benefits to individual care“Even if its like a standard ‘you fill out how you’re feeling’ [questionnaire] it can really help I think” (Patient 1)
Necessity of follow-up processes“Following up with a phone call or an SMS the CF clinic coordinator or the doctor or whoever just say hey just gone through the results of that questionnaire you did yesterday or two days ago in clinic a couple of you know red flags for me. How are you going.” (Patient 4)
Practicality of PROM implementationPreferred method of administration“I’m always happy to do it electronically.” (Caregiver 4)
Preferred frequency of administration“I think it’s a bit of a balance between overloading them with too much to do but also the relevance” (Clinician 3)
Considerations surrounding proxy reporting“You don’t truly know what your child is thinking and I guess I’ve seen situations where parents have come and said ‘My child is really sad or lethargic’ and then the child will say ‘I’m really not’” (Clinician 9)
  • HRQoL, health-related quality of life; PROMs, patient-reported outcome measures.