Table 3 Summary of themes in relation to the research questions by study type

How are PROMs/PREMs used to assess the experience and outcomes of CYP’s care and treatment in hospital?

76 (81%)

11 (12%)

7 (7%)

94

Screening/monitoring

31 (41%)

3 (27%)

2 (29%)

36 (38%)

Assessing treatment or care outcomes/changes in experience or care delivery

9 (12%)

4 (36%)

3 (43%)

16 (17%)

Insights into QOL/functioning/symptom and overall disease activity

12 (16%)

12 (13%)

Comparison with different population groups (proxies, other clinical groups, general population)

8 (11%)

8 (9%)

Used in clinical encounters

4 (5%)

4 (36%)

1 (14%)

9 (10%)

Quality improvement initiatives

3 (4%)

3 (3%)

EHRs available/results available prior to clinical encounters

9 (12%)

1 (14%)

10 (11%)

How are PROM/PREM data applied in clinical practice?

78 (87%)

12 (13%)

90

Help guide conversation and involve patients

16 (21%)

3 (25%)

19 (21%)

Tailored treatment

34 (44%)

5 (42%)

39 (43%)

Access to information

28 (36%)

4 (33%)

32 (36%)

How do PROMs/PREMs contribute to service development?

8 (67%)

1 (8%)

3 (25%)

12

Quality improvement/audits

4 (50%)

1 (100%)

1 (33%)

6 (50%)

Service planning

2 (25%)

1 (33%)

3 (25%)

Wider context

2 (25%)

1 (33%)

3 (25%)

Are there any patient groups for whom PROMs/PREMs are not an integral part of routine care provision?

26 (84%)

2 (6%)

3 (10%)

31

Organisational/health system constraints

11 (42%)

1 (50%)

12 (39%)

Measure restrictions

15 (58%)

1 (50%)

3 (100%)

19 (61%)

What is the evidence on the availability and utilisation of reports generated from CYP and proxies?

55 (69%)

5 (9%)

7 (10%)

67

Type of collection (if proxy only, or self-report only or both)

42 (76%)

5 (100%)

7 (100%)

54 (81%)

Proxies and self-reports provide different information

10 (18%)

10 (15%)

Privacy/ethical concerns

3 (6%)

3 (5%)