Sample characteristics
The characteristics of the participants are reported in Table 1. In the FP group, 121 mothers and 137 fathers of 124 daughters and 134 sons were included. The average age of the parents was 28.87 ± 5.84 years. In the control group, 500 mothers and 540 fathers of 509 daughters and 531 sons were included. The average age of the parents was 28.98 ± 5.32 years-old. The sex, age, ethnicity, number of children, education year, living area and annual household income did not significantly differ between these two groups (all P > 0.05). Thus, the family demographic variables did not need to be controlled for in subsequent analyses.
Table 1
The demographic characteristics of participants [N (%)]
Variable | FP group (n = 258) | Control group (n = 1040) | χ2/t | P |
Age of parents (year) | 28.87 ± 5.84 | 28.98 ± 5.32 | 0.29 | 0.770 |
Sex of parents (female) | 121(46.9) | 500(48.1) | 0.11 | 0.735 |
Sex of neonates (female) | 124(48.1) | 509(48.9) | 0.06 | 0.800 |
First child (yes) | 201(77.9) | 792(76.2) | 0.353 | 0.552 |
Ethnicity | | | | |
Han | 128(49.6) | 524(50.4) | 1.73 | 0.479 |
Zhuang | 123(47.7) | 472(45.4) |
Other | 7(2.7) | 44(4.2) |
Education year | | | | |
≤ 9 | 83(32.2) | 391(37.6) | 5.04 | 0.080 |
10–14 | 100(38.7) | 329(31.6) |
༞ 14 | 75(29.1) | 320(30.8) |
Living area | | | | |
Rural | 145(56.2) | 517(49.7) | 3.48 | 0.062 |
City | 113(43.8) | 523(50.3) |
Annual household income (yuan) | | | | |
< 50,000 | 74(28.7) | 316(30.4) | 0.47 | 0.792 |
50,000-100,000 | 145(56.2) | 560(53.8) |
> 100,000 | 39(15.1) | 164(15.8) |
Relevant Knowledge Of Ch
The parents in the FP group had a higher correctness rate for every question than did those in the control group, especially in clinical symptoms and treatment and prevention part (all P < 0.001). The parents in the FP group had higher scores than did the parents in the control group (t = 20.26, P < 0.001), which indicated that they had more relevant knowledge of CH. According to our criteria (the one who got 6 or more points), 324 parents were considered to have relevant knowledge of CH, that was 140 in the FP group (54.26%) and 184 in the control group (17.69%) respectively (Table 2). Within FP group, the demographic factors were not associated with having the relevant knowledge of CH (all P > 0.05).
Table 2
The parents' awareness of relevant knowledge of congenital hypothyroidism (CH) [N (%)]
Questions (correct answer) | FP group (n = 258) | Control group (n = 1040) | χ2/t | P |
Causes | | | | |
The incidence of CH may associated with the father's smoking and drinking behaviors (No) | 106(41.1) | 364(35.0) | 3.31 | 0.069 |
The incidence of CH may associated with the maternal iodine intake (Yes) | 145(56.2) | 519(49.9) | 3.28 | 0.070 |
The incidence of CH is totally determined by genes (No) | 134(51.9) | 457(43.9) | 5.33 | 0.021 |
Clinical symptoms | | | | |
Most newborns have no obvious clinical symptoms of CH at first beginning (Yes) | 224(86.8) | 156(15.0) | 515.0 | < 0.001 |
No clinical symptoms means no harm to CH children (No) | 173(67.0) | 105(10.1) | 398.5 | < 0.001 |
CH is an endocrine disease and does not affect children's intelligence (No) | 202(78.3) | 87(8.4) | 584.1 | < 0.001 |
Treatments and Preventions | | | | |
The thyroidectomy can cure CH for good (No) | 93(36.0) | 211(20.3) | 28.62 | < 0.001 |
Some CH children have to use medication all their lives (Yes) | 130(50.4) | 368(35.4) | 19.68 | < 0.001 |
Eat appropriate iodine products during pregnancy can prevent CH to a certain extent (Yes) | 177(68.6) | 547(52.6) | 21.48 | < 0.001 |
Genetic counselling can help to prevent CH (No) | 180(69.8) | 419(40.3) | 72.29 | < 0.001 |
Score | 6.06 ± 2.26 | 3.11 ± 2.05 | 20.26 | < 0.001 |
Subsequently, the source of knowledge were investigated. Most parents reported that they acquire the relevant knowledge from the internet, including Wechat public account, Sina Weibo or Bulletin Board System (n = 574, 44.22%); followed by from hospitals or doctors (n = 318, 24.50%), family members or friends (n = 268, 20.65%), publications (n = 107, 8.24%) and other sources (n = 31, 2.39%). In parents who having relevant knowledge of CH, most of them acquired the relevant knowledge from hospitals or doctors than other sources (n = 112, 35.22%) (Table 3). Furthermore, the source of knowledge had no statistical difference between the FP group and control group (χ2 = 8.143, P = 0.086).
Table 3
The influence factors of parents' relevant knowledge of congenital hypothyroidism (CH) [N (%)]
Variable | Knowledge of CH | χ2 | P |
Age of parents (year) | | | |
< 25 (n = 352) | 84(23.9) | 5.45 | 0.066 |
25–35 (n = 601) | 167(27.8) |
> 35 (n = 345) | 73(21.2) |
Sex of parents | | | |
Male (n = 677) | 168(24.8) | 0.02 | 0.898 |
Female (n = 621) | 156(25.1) |
Sex of neonates | | | |
Male (n = 665) | 163(24.5) | 0.09 | 0.766 |
Female (n = 633) | 161(25.4) |
First child | | | |
Yes (n = 993) | 234(23.6) | 4.40 | 0.036 |
No (n = 305) | 90(29.5) |
Ethnic | | | |
Han (n = 652) | 163(25.0) | 0.19 | 0.909 |
Zhuang (n = 595) | 147(24.7) |
Other (n = 51) | 14(27.5) |
Education year | | | |
≤ 9 (n = 474) | 97(20.5) | 9.40 | 0.009 |
10–14 (n = 429) | 111(25.9) |
༞ 14 (n = 395) | 116(29.4) |
Living area | | | |
Rural area (n = 662) | 151(22.8) | 3.34 | 0.068 |
Urban area (n = 636) | 173(27.2) |
Annual household income (yuan/year) | | | |
< 50,000 (n = 390) | 97(24.9) | 2.04 | 0.361 |
50,000-100,000 (n = 705) | 184(26.1) |
> 100,000 (n = 203) | 43(21.2) |
False-positive experience | | | |
Yes (n = 258) | 140(54.3) | 147.6 | < 0.001 |
No (n = 1040) | 184(17.7) |
Source of knowledge | | | |
Hospitals or doctors (n = 318) | 112(35.2) | 70.57 | < 0.001 |
Internet (n = 574) | 168(29.3) |
Family member or friends (n = 268) | 37(13.8) |
Publications (n = 107) | 6(5.6) |
Other (n = 31) | 1(3.2) |
In order to find out the factors that associated with having relevant knowledge of CH among 1298 parents, we compared the difference between different demographic characteristics, FP experience and source of knowledge. The FP experience (χ2 = 147.6, P < 0.001), source of knowledge (χ2 = 70.57, P < 0.001), education year (χ2 = 9.40, P = 0.009) and first child or not (χ2 = 4.40, P = 0.036) were significant correlated with having relevant knowledge. Take the “having relevant knowledge” as the independent variable and take the “FP experience”, “source of knowledge”, “education year” and “first child” as the dependent variable into the Logistic Regression. As a result, the FP experience and the source of knowledge were the major influence factors associted with having relevant knowledge of CH (both P < 0.001) (Table 4).
Table 4
The Logistic Regression analysis of the influence factors to parental awareness of relevant knowledge of congenital hypothyroidism (CH)
Items | B | S.E. | Wald | df | Sig. | Exp(B) | 95% CI for EXP(B) |
Lower | Upper |
First child (Yes) | 0.428 | 0.283 | 2.28 | 1 | 0.131 | 1.534 | 0.881 | 2.67 |
Education year (≤ 9) | | | 4.79 | 2 | 0.247 | | | |
Education year (10–14) | 0.414 | 0.301 | 1.89 | 1 | 0.169 | 1.513 | 0.838 | 2.729 |
Education year (༞ 14) | 0.602 | 0.465 | 1.68 | 1 | 0.195 | 1.826 | 0.734 | 4.541 |
False-positive experience (Yes) | -5.562 | 0.524 | 112.84 | 1 | < 0.001 | 0.004 | 0.001 | 0.011 |
Source of Knowledge (Hospitals or doctors) | | | 39.99 | 4 | < 0.001 | | | |
Source of Knowledge (Internet) | -1.41 | 0.871 | 2.62 | 1 | 0.105 | 0.244 | 0.044 | 1.345 |
Source of Knowledge (Family member or friends) | -3.207 | 0.507 | 29.97 | 1 | < 0.001 | 0.04 | 0.015 | 0.109 |
Source of Knowledge (Publications) | -3.475 | 0.560 | 31.01 | 1 | < 0.001 | 0.031 | 0.01 | 0.093 |
Source of Knowledge (Other) | -5.302 | 0.470 | 13.21 | 1 | < 0.001 | 0.005 | 0.002 | 0.013 |
Constant | 1.478 | 0.691 | 4.57 | 1 | 0.033 | 4.383 | | |
Parental Response And Parental Stress
The parents in the FP group received a recall phone call directly from GX-NBSC when the result of the initial newborn screening test was positive. Our retrospective investigation showed that 122 parents felt anxious (47.29%), and followed by panic (n = 49, 18.99%), worried (n = 49, 18.99%), concerned (n = 30, 11.63%) and distrustful (n = 13, 5.04%) after receiving the phone call. Even after well-trained pediatricians provided information on the phone call, most parents only remember being asked to bring their neonates to the hospital but did not understand why, even could not recall the name of disease (n = 123, 47.67%). A total of 34.50% of parents totally understood the situation and what to do during the phone call, some of them searched the internet with the key word “congenital hypothyroidism” (n = 89). The rest of the parents did not care what the pediatricians said or blindly believed that their neonates did not have any health issues (n = 46, 17.83%) (Table 5). All parents took their neonates for follow-up tests, and the tests were performed an average of 3.81 ± 2.59 days after the parents received the phone call.
Table 5
The feelings of parents in false-positive (FP) group when the answered the first recall call [N(%)]
Outcomes | Anxious | Concerned | Distrustful | Panic | Worried |
Type 1: take baby back to hospital and understand the phone call (n = 89) | 48(39.8) | 18(60.7) | 1(7.8) | 12(24.8) | 17(35.1) |
Type 2: take baby back to hospital but not understand the phone call (n = 123) | 51(42.1) | 10(33.6) | 3(23.3) | 30(61.7) | 30(61.7) |
Type 3: unwilling to take baby back to hospital (n = 46) | 23(18.9) | 2(6.7) | 9(69.2) | 7(14.3) | 2(4.1) |
Because the PSI scores for subjects whose defensive responding index was > 10 were included in the analysis, 1 mother and 2 fathers were excluded from the FP group, and 2 mothers and 3 fathers were excluded from the control group. As shown in Table 6, both the mothers and fathers in the FP group reported higher overall stress on the PSI than did those in the control group (mothers: t = 15.85, P < 0.001; fathers: t = 11.43, P < 0.001). In the FP group, 11 mothers (9.17%) and 1 father (0.74%) had scores higher than 85, which indicated that they needed psychological services. However, no parents in the control group had scores within the clinical range. The differences between groups were more pronounced in the total score, parent-child dysfunctional interaction subscales, and difficult child subscales than in the parental distress subscales (all P < 0.01). Most mothers and fathers in the same group showed similar scores on PSI scores; however, the mothers in the FP group had higher scores on the parent-child dysfunction interaction subscale than did the fathers (t = 2.51, P = 0.013). The parents in the FP group who understood the situation well after the recall phone call had lower PSI scores than did the rest of the parents in the FP group (70.7 ± 8.5 vs. 73.9 ± 7.3, t = 3.24, P = 0.001). The PSI scores did not significantly differ among parents with different awareness rate of knowledge and demographic characteristics (all P > 0.05).
Table 6
Parenting Stress Index (PSI) Scores for False-Positive (FP) and Control Groups (Mean ± SEM)
Variable | FP group (M/F = 135/120) | Control group (M/F = 537/498) | t | P |
Total score | | | | |
Mothers | 73.7 ± 7.8 | 61.9 ± 7.2 | 15.85 | < 0.001 |
Fathers | 71.8 ± 8.2 | 63.3 ± 7.6 | 11.43 | < 0.001 |
Parental distress subscale | | | | |
Mothers | 28.1 ± 5.0 | 25.1 ± 5.3 | 5.626 | < 0.001 |
Fathers | 27.3 ± 5.5 | 25.9 ± 4.9 | 2.893 | 0.0039 |
Difficult child subscale | | | | |
Mothers | 25.8 ± 4.8 | 20.7 ± 4.0 | 12.04 | < 0.001 |
Fathers | 25.9 ± 5.2 | 21.3 ± 4.1 | 11.00 | < 0.001 |
Parent-child dysfunction interaction subscale | | | | |
Mothers | 19.8 ± 3.7 | 16.1 ± 3.2 | 11.02 | < 0.001 |
Fathers | 18.6 ± 3.9 | 16.2 ± 2.4 | 9.013 | < 0.001 |
There were 3 mothers and 5 fathers were excluded due to their PSI scores were < 10. Abbreviations: F: female; M: male |