Table 2.
Nature and timing of different clinic reviews by type (in-person, video, telephone)
| PKU clinic review type | ||||
|---|---|---|---|---|
| In-person % (n = 180–184)* |
Online Video % (n = 140–143)* |
Telephone % (n = 113–119)* |
p value** | |
| Attendance at clinic reviews | 98 (181/184) | 70 (143/203) | 59 (119/203) | N/A |
| Always see/speak to a doctor | 80 (146) | 64 (91) | 50 (59) | < 0.0001 |
| No. HCPs in the room at clinic review in addition to doctor | ||||
|
None One Two Three Four ≥Five Varies (1–4) Not reviewed by a medical doctor |
- 15 (28) 43 (79) 19 (35) 17 (31) 2 (3) 3 (5) - |
2 (3) 42 (60) 34 (48) 12 (17) 4 (6) 3 (4) 0 (0) 3 (5) |
2 (2) 66 (75) 23 (26) 5 (6) - - - 3 (3) |
< 0.0001 |
| HCPs present in the same room at the clinic review | ||||
|
Doctor Dietitian Nurse Medical trainee Psychologist Biochemist Unsure who they are Other e.g. midwife, advanced practitioner, PKU coordinator, dentist, pharmacist, adult PKU team, phlebotomist |
93 (168) 56 (101) 49 (89) 31 (56) 1 (1) - 1 (1) 4 (7) |
64 (89) 81 (113) 25 (35) 8 (11) 1 (1) - 1 (2) 1 (2) |
57 (66) 63 (72) 17 (19) 3 (3) - 1 (1) 3 (3) 1 (1) |
< 0.0001 |
| Which HCPs do you see at the clinic review (but not necessarily in the same room at the same time) | ||||
|
Doctor Dietitian Nurse Medical trainee Psychologist Biochemist Not sure who they are Other (midwife, phlebotomist, advanced practitioner, clinical support worker) |
91 (166) 97 (177) 40 (74) 31 (56) 2 (3) 1 (1) - 3 (6) |
N/A | N/A | N/A |
| Total time spent in clinic review | ||||
|
≤ 15 min ≤ 30 min 30 min to 1 h 1 to 2 h > 2 h |
10 (18) 24 (44) 34 (63) 29 (53) 4 (7) |
22 (31) 41 (58) 34 (49) 3 (4) - |
49 (57) 33 (38) 16 (19) 2 (2) - |
< 0.0001 |
| Opinion on the length of the clinic review | ||||
|
Just right Too short Too long Don’t know |
83 (151) 8 (15) 5 (10) 4 (7) |
70 (100) 20 (28) 3 (5) 7 (10) |
68 (79) 23 (27) 2 (2) 7 (8) |
0.03 |
| How stressful/relaxed are clinic reviews | ||||
|
Stressful Slightly stressful Neutral Relaxed Very relaxed |
12 (21) 26 (47) 26 (48) 23 (41) 14 (25) |
8 (12) 28 (40) 27 (38) 27 (38) 10 (14) |
6 (7) 19 (22) 37 (43) 27 (31) 12 (14) |
0.48 |
| How useful are clinic reviews | ||||
|
Very useful Useful Neutral Not useful Don’t know |
50 (92) 38 (69) 8 (14) 4 (8) - |
30 (43) 36 (52) 19 (27) 13 (19) 1 (2) |
29 (34) 27 (31) 31 (36) 14 (16) - |
< 0.0001 |
| Sensitive topics are discussed at clinic reviews | 24 (44) | 21 (29) | 12 (14) | 0.08 |
*Note the number of respondents varied by question; PKU Phenylketonuria, HCP Healthcare Professional
**Chi-square test; N/A not applicable