Article Figures & Data
Tables
CHARACTERISTIC FAMILY PHYSICIANS
n (%), N = 208*PEDIATRICIANS
n (%), N = 68*MIDWIVES
n (%), N = 45*TOTAL
n (%), N = 321 *Practice setting • Academic† 8 (3.8) 4 (5.9) 0 (0.0) 12 (3.7) • Non-academic 200 (96.2) 64 (94.1) 45 (100.0) 309 (96.3) Practice type • Solo 40 (19.2) 41 (61.2) 1 (2.2) 82 (25.6) • Group‡ 168 (80.8) 26 (38.8) 44 (97.8) 238 (74.4) Method of reimbursement • Fee-for-service§ 62 (29.8) 62 (91.2) 0 (0.0) 124 (38.6) • Non–fee-for-service 146 (70.2) 6 (8.8) 45 (100.0) 197 (61.4) Practice location • Urban 123 (59.4) 58 (85.3) 33 (73.3) 214 (66.9) • Rural 84 (40.6) 10 (14.7) 12 (26.7) 106 (33.1) Years in practice • 0-15 83 (39.9) 26 (38.2) 40 (88.9) 149 (46.4) • ≥ 16 125 (60.1) 42 (61.8) 5 (11.1) 172 (53.6) Sex • Female 130 (62.8) 28 (41.2) 45 (100.0) 203 (63.4) • Male 77 (37.2) 40 (58.8) 0 (0.0) 117 (36.6) Practice-based exposure to … • CF 58 (28.0) 37 (54.4) 10 (22.7) 105 (32.9) • CF carrier 66 (32.2) 34 (52.3) 22 (51.2) 122 (39.0) • NBS results positive for CF 47 (22.7) 33 (50.0) 26 (59.1) 106 (33.4) • NBS results positive for another disorder 85 (41.1) 53 (80.3) 30 (69.8) 168 (53.2) CF—cystic fibrosis, NBS—newborn screening.
↵*Denominators vary owing to missing data.
↵†Includes providers who see any patients in academic health sciences centres.
↵‡Includes interprofessional practice as well as single-discipline group practice.
↵§Includes providers who reported any fee-for-service. Midwives in Ontario are publicly funded but not fee-for-service.
CHARACTERISTIC FAMILY PHYSICIANS
n (%), N = 17PEDIATRICIANS
n (%), N = 4MIDWIVES
n (%), N = 13*TOTAL
n (%), N = 34Practice setting • Academic† 0 (0.0) 1 (25.0) 0 (0.0) 1 (2.9) • Non-academic 17 (100.0) 3 (75.0) 13 (100.0) 33 (97.1) Practice type • Solo 1 (5.9) 0 (0.0) 1 (7.7) 2 (5.9) • Group‡ 16 (94.1) 4 (100.0) 12 (92.3) 32 (94.1) Method of reimbursement • Fee-for-service§ 4 (23.5) 3 (75.0) 0 (0.0) 7 (20.6) • Non–fee-for-service 13 (76.5) 1 (25.0) 13 (100.0) 27 (79.4) Practice location • Urban 9 (52.9) 4 (100.0) 10 (76.9) 23 (67.6) • Rural 8 (47.1) 0 (0.0) 3 (23.1) 11 (32.4) Years in practice • 0-15 13 (76.5) 3 (75.0) 11 (84.6) 27 (79.4) • ≥ 16 4 (23.5) 1 (25.0) 2 (15.4) 7 (20.6) Sex • Female 14 (82.4) 4 (100.0) 13 (100.0) 31 (91.2) • Male 3 (17.6) 0 (0.0) 0 (0.0) 3 (8.8) Practice-based exposure to … • CF 4 (23.5) 2 (50.0) 3 (23.1) 9 (26.5) • CF carrier 6 (35.3) 1 (25.0) 6 (46.2) 13 (38.2) • NBS results positive for CF 4 (23.5) 2 (50.0) 7 (53.8) 13 (38.2) • NBS results positive for another disorder 5 (29.4) 4 (100.0) 8 (61.5) 17 (50.0) CF—cystic fibrosis, NBS—newborn screening.
↵*Fifteen midwives were interviewed but the audio for 1 interview (with 2 midwives) did not record properly, so data are reported for 13 participants.
↵†Includes providers who see any patients in academic health sciences centres.
↵‡Includes interprofessional practice as well as single-discipline group practice.
↵§Includes providers who reported any fee-for-service. Midwives in Ontario are publicly funded but not fee-for-service.
CHARACTERISTIC FAMILY PHYSICIANS
n (%), N = 208*PEDIATRICIANS
n (%), N = 68*MIDWIVES
n (%), N = 45*P VALUE Up to date on NBS < .01† • Strongly agree or agree 90 (43.7) 57 (85.1) 35 (81.4) • Strongly disagree, disagree, or neutral 116 (56.3) 10 (14.7) 8 (18.6) Important role in NBS in general < .01† • Strongly agree or agree 153 (74.3) 59 (88.1) 44 (100.0) • Strongly disagree, disagree, or neutral 53 (25.7) 8 (11.9) 0 (0.0) Important role in notification of NBS results .07† • Strongly agree or agree 183 (88.4) 56 (83.6) 44 (97.8) • Strongly disagree, disagree, or neutral 24 (11.6) 11 (16.4) 1 (2.2) Confidence regarding notification .17† • Extremely or very confident 132 (63.8) 51 (75.0) 36 (80.0) • Moderately confident 57 (27.5) 14 (20.6) 8 (17.8) • Not very or not at all confident 18 (8.7) 3 (4.4) 1 (2.2) Perceived barriers to notifying within 3 d .02‡ • Extremely or very significant 17 (8.2) 7 (10.3) 0 (0.0) • Moderately significant 40 (19.3) 22 (32.4) 8 (17.8) • Not very or not at all significant 150 (72.5) 39 (57.4) 37 (82.2) Perceived barriers to notify within 1 d .01† • Extremely or very significant 72 (35.0) 28 (43.1) 9 (20.5) • Moderately significant 65 (31.6) 16 (24.6) 9 (20.5) • Not very or not at all significant 69 (33.5) 21 (32.3) 26 (59.1) Preference for point-of-care information§ < .01‡ • Written information 44 (21.7) 13 (19.7) 6 (13.6) • Verbal communication with treatment centre provider 17 (8.4) 2 (3.0) 0 (0.0) • Both written and verbal 120 (59.1) 47 (71.2) 38 (86.4) • Either written or verbal (does not matter which) 22 (10.8) 4 (6.1) 0 (0.0) EXPERIENCE FAMILY PHYSICIANS
n (%), N = 163*PEDIATRICIANS
n (%), N = 45*MIDWIVES
n (%), N = 35*P VALUE Notified family .46† • Yes 103 (66.9) 28 (71.8) 27 (77.1) • No 51 (33.1) 11 (28.2) 8 (22.9) Confidence when notifying family .03‡ • Extremely or very confident 56 (45.5) 25 (73.5) 18 (64.3) • Moderately confident 51 (41.5) 8 (23.5) 9 (32.1) • Not very or not at all confident 16 (13.0) 1 (2.9) 1 (3.6) Point-of-care information received < .01† • Written information 67 (54.9) 25 (71.4) 8 (28.6) • Verbal communication with treatment centre provider 22 (18.0) 7 (20.0) 8 (28.6) • Both written and verbal 33 (27.0) 3 (8.6) 12 (42.9) Most helpful point-of-care information§ .02‡ • Written information from NBS program 67 (59.8) 19 (59.4) 11 (45.8) • Verbal information from NBS program 31 (27.7) 5 (15.6) 12 (50.0) • Own prior knowledge 9 (8.0) 8 (25.0) 1 (4.2) • Other 5 (4.5) 0 (0.0) 0 (0.0) Existing relationship with family < .01† • Yes 140 (92.1) 17 (42.5) 32 (91.4) • No 12 (7.9) 23 (57.5) 3 (8.6) Caring for infant since birth .40‡ • Yes 145 (94.8) 36 (90.0) 32 (91.4) • No 8 (5.2) 4 (10.0) 3 (8.6) NBS—newborn screening, NSO—Newborn Screening Ontario.
↵*No. of respondents who reported being contacted by NSO about screen-positive results for a child in their practice. Denominators vary owing to missing data.
↵†
2 test.↵‡Fisher exact test.
↵§Excludes 17 respondents who checked more than 1 option when asked to select 1.
- Table 5.
Factors associated with PCP notification of parents of children with positive CF NBS results among those contacted by NSO
FACTOR ADJUSTED RR (95% CI) Beliefs Beliefs about PCP role in NBS • Important role in general (agree vs disagree) 1.31 (1.00-1.71)* • Important role in notification (agree vs disagree) 1.25 (0.83-1.88) Confidence Confident making the notification • Extremely or very confident vs not very or not at all confident 1.26 (0.76-2.09) • Moderately confident vs not very or not at all confident 1.05 (0.61-1.79) Preparedness Point-of-care information received • Verbal communication with treatment centre vs both written and verbal 0.96 (0.86-1.08) • Written information vs both written and verbal 0.79 (0.69-0.92)† Practice-based exposure to … • CF (yes vs no) 1.11 (0.98-1.26) • CF carrier (yes vs no) 0.95 (0.84-1.08) • NBS results positive for CF (yes vs no) 1.01 (0.87-1.18) • NBS results positive for another disorder (yes vs no) 1.03 (0.89-1.20) Relationship with family Existing relationship with family (yes vs no) 0.87 (0.73-1.04) Caring for infant since birth (yes vs no) 1.06 (0.75-1.50) Perceived barriers Practice-related barriers to notify within 1 d • Extremely or very significant vs not very or not at all significant 1.11 (0.91-1.36) • Moderately significant vs not very or not at all significant 1.07 (0.91-1.24) Practice-related barriers to notify within 3 d • Extremely or very significant vs not very or not at all significant 0.97 (0.71-1.31) • Moderately significant vs not very or not at all significant 0.86 (0.68-1.09) PCP characteristics Practice type (solo vs group) 0.96 (0.80-1.16) Practice location (urban vs rural) 0.97 (0.85-1.09) Years in practice (0-15 vs ≥ 16) 1.07 (0.93-1.22) Sex (female vs male) 1.07 (0.93-1.22) Provider type • Family physician vs midwife 1.04 (0.85-1.27) • Pediatrician vs midwife 0.96 (0.73-1.26) CORE THEME SAMPLE DATA REPRESENTING EACH THEME Balancing pre-existing relationship with required expertise “OK, so a stranger calls you from the hospital and says your child might have cystic fibrosis, but we just have to check to be sure, it’s probably worse than if I sit down and talk with them, speak with them after I’ve had a relationship for several years” (F2) “I don’t know enough to counsel parents and they usually have a lot more questions than I can answer .… I don’t know enough about all the statistics and the next steps, and where to go and what bloodwork they have to do. So I find it easier for the person from the newborn screening to call them” (P4) System design “Really, like not beyond textbook knowledge and, you know, I’ve never had that result .… So when I saw [the result], I panicked a little—oh my god—I really don’t know anything about this condition, but it didn’t matter because I got such good thorough information, I felt like I could convey the basics to my client. And I was able to refer her to the professionals quickly so it was just seamless; it was a really good experience” (M2) “So I get a panicked call at about 3 pm or so in the afternoon, from the dad .… ‘We got some call about something to do with CF in [child’s name].’ I had not received any results yet … I’d received no information, like nothing. They got the call from [NSO] saying they’re being referred, so they’re in like a total panic .… And so it just, it was a bit of a challenging position for me .… I’m scrambling trying to get information before I call them back, in the middle of clinic. Had I received the result beforehand … a couple of hours in an evening to figure it out before I called the family to tell them, or before I heard from them” (F4) CF—cystic fibrosis, F—family physician, M—midwife, NSO—Newborn Screening Ontario, P—pediatrician, PCP—primary care practitioner.
