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. 2025 Jun 5;114(10):2702–2709. doi: 10.1111/apa.70170

Motor Performance, Health‐Related Quality of Life and Self‐Esteem in Early Adolescence After Neonatal Therapeutic Hypothermia

Mimmi Eriksson Westblad 1,2,, Sari Kokkonen Nassef 1, Mats Blennow 1,3, Maria Jirwe 4,5, Katarina Lindström 1,6
PMCID: PMC12420856  PMID: 40470714

ABSTRACT

Aim

To explore the correlation between motor performance, health‐related quality of life (HRQOL) and self‐esteem in early adolescents treated with therapeutic hypothermia (TH) following neonatal hypoxic–ischaemic encephalopathy (HIE).

Method

This cross‐sectional study included 45 children (mean age 11 years) with a neonatal TH‐treated HIE between 2007 and 2009 in Stockholm. Motor performance was assessed with Movement Assessment Battery for Children‐2 (MABC‐2), HRQOL by Paediatric Quality of Life Inventory (PedsQL 4.0) and self‐esteem with ‘I Think I Am ‐2’. Nonparametric statistical methods were applied.

Results

Significant positive correlations were found between MABC‐2 scores and all PedsQL 4.0 dimensions in parents' reports (p < 0.001–0.029). Parents reported lower PedsQL 4.0 Total scores for children below the 15th percentile on MABC‐2 (p = 0.004), while the self‐reports of the same children were not significant (p = 0.098). Motor performance did not affect children's self‐esteem; no difference was found between the group above or the group below the 15th percentile (p = 0.881).

Conclusion

Differences between parent and child‐reported outcomes suggest the need for continued follow‐up of children treated with TH into adolescence, including HRQOL and self‐esteem. Long‐term assessment is necessary to identify challenges not captured in early childhood or by self‐reports alone.

Keywords: health‐related quality of life, hypoxic–ischaemic encephalopathy, motor performance, perinatal asphyxia, self‐esteem, therapeutic hypothermia


Summary.

  • There is a lack of studies exploring the long‐term outcomes, including the correlation between motor performance, health‐related quality of life and self‐esteem in adolescents after neonatal therapeutic hypothermia.

  • The results showed positive correlations between motor performance and health‐related quality of life in parents' reports, but no impact on the child's self‐esteem.

  • These findings highlight the importance of follow‐up into adolescence considering various aspects of the children's quality of life.

Abbreviations

CP

Cerebral palsy

HIE

Hypoxic–Ischaemic Encephalopathy

HRQOL

Health‐Related Quality of Life

IQR

Interquartile range

ITIA‐2

Think I Am −2

MABC‐2

Movement Assessment Battery for Children‐2

NICHD

National Institute of Child Health and Human Development

PedsQL 4.0

Paediatric Quality of Life Inventory 4.0

TH

Therapeutic Hypothermia

TOBY

Total Body Hypothermia for Neonatal Encephalopathy

1. Introduction

Perinatal asphyxia (intrapartum related condition) has an incidence of 1/1000 live births in high‐resource countries and 5–10/1000 live births in low‐resource countries [1]. It may lead to hypoxic ischaemic encephalopathy (HIE) classified by Sarnat in three stages: mild, moderate and severe [2]. Therapeutic hypothermia (TH) is the standard treatment for moderate or severe HIE in high‐resource settings, reducing mortality and severe cerebral palsy (CP) rates [3]. While the benefits of TH for neurodevelopment at 18 to 24 months have been studied [4, 5], knowledge of the long‐term outcomes at school age and beyond is still limited [6, 7, 8, 9]. During adolescence, children with mild or moderate HIE who were not treated with TH may experience difficulties at school as well as neuropsychological and peer problems [10, 11]. These findings highlight the multifaceted influence of HIE on various aspects of functioning, including HRQOL and self‐esteem.

Most HRQOL studies in children with HIE have focused on early school age. One study found better outcomes in children aged 6–7 years with TH‐treated HIE compared to those who received standard intensive care [12]. Another study of 5‐ to 7‐year‐olds treated with TH found no significant difference in the HRQOL dimension of Physical Functioning between the TH group and healthy [13]. However, HRQOL data for adolescents with TH‐treated HIE remain limited.

Self‐esteem is another factor in an individual's well‐being, described as ‘a simplistic term for varied and complex mental states pertaining to how one views oneself’ [14]. Children who enter adolescence with lower self‐esteem, or develop poorer self‐esteem during adolescence, are more likely to exhibit symptoms of depression as adults [15]. Self‐esteem may be influenced by several factors, including emotional stability and overall health [16]. A follow‐up study from the National Institute of Child Health and Human Development (NICHD) trial found no significant differences in parental assessments of psychosocial health or self‐esteem between children aged 6–7 years with moderate or severe HIE treated with TH and those receiving standard care [8].

Children with motor problems tend to avoid physical activity, which can lead to secondary consequences, such as a sedentary lifestyle and negative health outcomes [17, 18]. Motor difficulties can also affect self‐esteem [18]. Even in the absence of CP, motor difficulties have been identified in children with neonatal HIE, despite TH [9, 13, 19].

Studying children with a history of TH‐treated HIE as they enter early adolescence provides insights into the long‐term impact on HRQOL, self‐esteem, and motor performance. Previous research on HRQOL, self‐esteem, and motor skills has primarily focused on early school‐age [6, 8, 12, 19, 20]. However, little is known about this group's transition into adolescence, which underscores the need to follow these children [21]. To the best of our knowledge, no study has explored the correlations between motor performance, HRQOL and self‐esteem in early adolescents who underwent TH following neonatal HIE. The aim was therefore to explore correlations between motor performance, HRQOL, and self‐esteem in early adolescents treated with TH following neonatal HIE.

2. Method

2.1. Study Design and Participants

This cross‐sectional, explorative study is part of a prospective population‐based long‐term follow‐up study [7, 9]. In total, 66 children were treated with TH between 2007 and 2009 in Stockholm. Seven of these infants died before discharge from the neonatal intensive care unit (NICU). One child died before two years of age, resulting in a total mortality of 8/66 (12%). One child was excluded from further analyses due to a genetic syndrome. Five children were lost to follow‐up due to moving abroad. Thus, 52 children and their parents were invited to participate in the study. Eight of the 52 invited children were diagnosed with Cerebral Palsy (CP) classified according to the Gross Motor Function Classification System (GMFCS I–V) [22]. One child was classified at GMFCS III and three children at GMFCS V; all were unable to participate in the motor tests. Four children classified with GMFCS I (mild CP) could all participate in the motor tests. Additionally, three invited children without CP or without known neurodevelopmental difficulties decided not to participate. The final sample consisted of 45 participants, 22 girls and 23 boys. The mean age was 11.1 years (SD 0.78). The children and their parents were invited to participate when the children reached the age of 10 to 12 years. Written informed consent was obtained from the parents, with assent from the children. Ethical approval was obtained from the Stockholm Ethical Review Authority 2019–01447. Details of the total population have been previously presented [7, 9]. Demographic data for the participants in the current study are presented in Table 1.

TABLE 1.

Demographic characteristics of participants (n = 45).

Gestational age at birth in weeks + days, median (IQR; min–max) 40 + 4 (38 + 3–42 + 6; 34 + 0–42 + 1)
Boys/girls 23/22
Birth weight in gram, median (IQR; min–max) 3500 (2823–4177; 2376–4990)
HIE Sarnat stage I 2 (4.4%)
HIE Sarnat stage II 39 (86.6%)
HIE Sarnat stage III 4 (8.8%)
Apgar at 1 min, median (IQR; min–max) 1 (0–1; 0–9)
Apgar at 5 min, median (IQR; min–max) 3 (1–5; 0–10)
Apgar at 10 min, median (IQR; min–max) 4 (0–8; 0–10)
Lowest pH within 60 min, median (IQR; min–max) 6.9 (6.8–7; 6.5–7.3) *
Lowest BE (mmol/L) within 60 min, median (IQR, min–max) −19 (−11 to −27; −29 to −10) **

Note: Interquartile range (IQR), Minimum–maximum (min–max).

Base excess (BE).

Table 1 is reproduced with permission from the original publication: ‘Long‐term motor development after hypothermia‐treated hypoxic‐ischaemic encephalopathy’, published in European journal of paediatric neurology, 2023. Available under the Creative Commons Attribution Licence (CC BY). For full details, see the original publication here and the Creative Commons user licence here. https://doi.org/10.1016/j.ejpn.2023.10.003 1.

*

Missing data from six children (n = 39).

**

Missing data from eleven children (n = 34).

2.2. Assessments

2.2.1. Movement Assessment Battery for Children 2nd Edition (MABC‐2)

MABC‐2 is a standardised and norm‐referenced assessment of motor competence for children aged 3–16 years, divided into three age bands: 3–6, 7–10 and 11–16 years. It contains three subscales: Manual Dexterity, Aiming and Catching and Balance. Each subscale provides a raw score converted into both a total standard score (mean = 10, Standard Deviation (SD) = 3) and percentile equivalents that are compared with normative data. A test score at or below the 5th percentile indicates high risk of motor difficulties, while scores between the 6th and 15th percentiles indicate a child ‘at risk’ of motor difficulties. Scores above the 15th percentile indicate no risk of motor difficulties [23]. In the present study we used the MABC‐2 to assess motor performance. In this study we used the total and percentile scores. MABC‐2 has shown good psychometric properties.

2.3. The Paediatric Quality‐of‐Life Inventory (PedsQL 4.0)

PedsQL 4.0 is a HRQOL self‐assessment instrument, which is functioning‐oriented and validated for children 8–12 years and adolescents 13–18 years. In the present study, we used the children's version. The parent proxy assessment served as an additional report in order to compare the two assessments of the child's HRQOL [24]. The PedsQL 4.0 consists of 23 items in four dimensions: Physical, Emotional, Social, and School Functioning. Combined, the Emotional, Social, and School Functioning dimensions constitute the Psychosocial Health score. The child and parent estimate how great a problem each statement in every dimension has been for the child within the past month, from 0 (never) to 4 (almost always). The items are scored reversely from 0 to 100, where 0 corresponds to 100 points, 1 to 75 points, 2 to 50 points, 3 to 25, and 4 to 0 points. Higher scores indicate higher HRQOL [24].

2.4. I Think I Am‐2 (ITIA‐2)

ITIA‐2 is a self‐assessment instrument for measuring self‐esteem in children and young people [25], suitable for both research and practical application, including screening and intervention evaluating. There are two versions: A for ages 7–9 years, and B for ages 10–18 years. Version B was used in this study. The instrument measures overall self‐esteem and self‐evaluations on five subscales: Physical Properties, Skills and Competence, Mental Wellbeing, Relationships with Parents and Family and Relationships with Others. It contains 64 statements with four response alternatives: ‘agree completely’, ‘agree partly’, ‘disagree partly’ and ‘disagree completely’. A total score for each subscale and the Total scale reflecting the child's global self‐esteem are provided. Higher scores indicate better self‐esteem. The Stanine scale is used, (ranges 1–9, mean = 5, SD =2) converting total scores to standard scores, with 1–3 below average, 4–6 normal range and 7–9 above average. ‘I Think I Am‐2’ has been normed for Swedish children [25].

2.5. Procedure

The children and their parents were invited to the Karolinska University Hospital for a one‐day assessment. The children's motor performance using the MABC‐2 was assessed by a physiotherapist (MEW). The children's HRQOL was obtained by self‐report with the PedsQL 4.0. Additionally, parents provided proxy report of their child's HRQOL through the parent version of the PedsQL 4.0. The children reported their self‐esteem using the ITIA‐2.

2.6. Statistical Analysis

Data were assessed for normality by the Shapiro–Wilk test. For nonparametric data, the median and interquartile range (IQR) were employed to summarise central tendency as well as variability. While the MABC‐2 data were normally distributed, the mean and the standard deviation (SD) were used; the PedsQL 4.0 and ITIA‐2 data were not, so nonparametric statistics were used for these variables. Kendall's tau (τb) was calculated to describe correlations. Statistical significance was set at p < 0.05. Correlation coefficients were categorised as low (0.3–0.5), moderate (0.5–0.7) or high (0.7–0.9) [26]. The Wilcoxon sign‐rank test was used to assess differences between PedsQL 4.0 scores from parents and children. Participants below the 25th percentile on the PedsQL 4.0, represent the lowest quartile. A one‐sample Wilcoxon test was performed to compare ITIA‐2 scores against the normative test mean of 5, with median scores presented to reflect the central tendency. The Mann–Whitney U test examined differences in PedsQL 4.0 and ITIA‐2 total scores by sex as well as between children scoring above and below the 15th percentile on the MABC‐2, based on both the parents and children's reports from the PedsQL 4.0. Statistical analyses were conducted using IBM SPSS Statistics for Windows, Version 28.0.

3. Results

3.1. Motor Performance

The mean MABC‐2 total standard score for the 45 participating children was 8.24 (95% CI: 7.33–9.16) with a SD of 3.05. Almost one‐third (14/45, 31%) of the children scored below the 15th percentile (indicating existing or at risk of motor difficulties) in early adolescence. These results have previously been reported [9].

3.2. HRQOL

In the PedsQL 4.0 dimensions, children's median scores are shown along with their parents. The children's median scores for Physical and School Functioning were lower than those of parents. The median scores for both Emotional and Social Functioning were identical between children and parents. Children reported higher Psychosocial Health, while the Total PedsQL 4.0 median score was lower for children than for parents (Table 2).

TABLE 2.

Dimensions from the PedsQL 4.0 children's self‐reports and parents' proxy report.

PedsQL 4.0 dimensions Children (n = 45) parents (n = 44)* Median Min Max IQR
Physical Functioning

Children

Parents

90.6

96.8

25

15.6

100

100

81.2 – 96.8

84.3 – 100

Emotional Functioning

Children

Parents

80

80

40

10

100

100

70.0 – 90.0

65.0 – 95.0

Social Functioning

Children

Parents

95

95

45

45

100

100

85.0 – 100

80.0 – 100

School Functioning

Children

Parents

85

87.5

50

25

100

100

75.0 – 95.0

60.0 – 100

Psychosocial Health

Children

Parents

88.3

86.7

61.7

38.3

100

100

78.3 – 93.3

68.3 – 96.6

Total PedsQL 4.0 score

Children

Parents

87.1

88.3

52.5

39

100

100

76.9 – 92.9

70.3 – 97.3

Note: Total median score for children's self‐reports and parents' proxy reports of the PedsQL 4.0 dimensions.

Higher scores indicate higher HRQOL, n = sample size, Min = Minimum, Max = Maximum, Interquartile Range (IQR).

*One parent's report is missing.

*

One parent's report is missing.

No significant differences between boys and girls were found in the Total PedsQL 4.0 scores. Girls had a median score of 88.5 (IQR 77.5 – 94.6, n = 22) and boys had a median score of 87.1 (IQR 76.0 – 91.8, n = 23, p = 0.532).

Figure 1 shows the proportion of scores below the 25th percentile on the PedsQL 4.0 dimensions, based on children's self‐report and parent's proxy reports. Both groups reported equal numbers of low scores in Emotional Functioning. However, more children self‐reported low scores in Physical Functioning, while more parents rated their child below the 25th percentile in Social Functioning. For the Total Score, both groups had a relatively high number of members below the 25th percentile, indicating the children's lower overall functioning (Figure 1).

FIGURE 1.

FIGURE 1

Children's and parents’ scoring below the 25th percentile on the PedsQL 4.0 across various domains (Physical, Emotional, Social and School Functioning, as well as the Total score). The darker bars represent the children's self‐reports, while the lighter ones are the parents' proxy reports.

3.3. Self‐ Esteem

Table 3 presents the children's self‐esteem scores from the ITIA‐2 questionnaire (normative test mean of 5). The children scored above this norm in all subscales, with a median global self‐esteem score of 7 (Table 3).

TABLE 3.

Children's self‐reported self‐esteem scores.

I thing i am subscales (total n 45) Stanine range 1–3 n (%) Stanine range 4–6 n (%) Stanine range 7–9 n (%) Median scores IQR
Physical properties 5 (11.1) 20 (44.4) 20 (44.4) 6 5 – 8
Skills and competence 6 (13.3) 15 (33.3) 24 (53.3) 7 5 – 8
Mental well‐being 7 (15.6) 22 (48.9) 16 (35.6) 6 4 – 7
Relationship with Family 2 (4.4) 19 (42.2) 24 (53.3) 7 5 – 8
Relationship with Others 2 (4.4) 13 (28.9) 30 (66.7) 7 6 – 9
Total score 5 (11.1) 13 (28.9) 27 (60.0) 7 5 – 8

Note: The distribution of children presented in the three Stanine ranges, from I think I Am‐2, assessed at mean 11 years, 1–3 (below average), 4–6 (normal range) and 7–9 (above average) for the five subscales and the Total score. Higher scores indicate better self‐esteem. The table includes the number of children (n), the median scores and Interquartile Range (IQR).

No significant differences between girls and boys were found in total self‐esteem scores. Girls had a median score of 7 (IQR 5.8 – 9, n = 22) and boys a median score of 7 (IQR 5 – 8, n = 23, p = 0.564).

3.4. Motor Performance and Correlation With HRQOL

The correlation analysis revealed no significant relationship between the MABC‐2 total score and children's self‐reported PedsQL 4.0 score, including individual dimensions, the Psychosocial Health and the Total score. However, significant correlations were found between MABC‐2 scores and parents' proxy reports across all dimensions, as well as in the Psychosocial Health dimension and the Total score (Table 4).

TABLE 4.

Correlation between motor performance as measured by the MABC‐2 total standard score and HRQOL measured by the PedsQL 4.0 self‐reported by the children (n = 45) and by the parents' proxy reports (n = 44).

PedsQL 4.0 dimensions Children Parents
Kendall's tau (τb) p Kendall's tau (τb) p
Physical Functioning 0.20 0.077 0.33 0.005**
Emotional Functioning −0.08 0.480 0.25 0.029*
Social Functioning 0.12 0.315 0.40 < 0.001***
School Functioning 0.20 0.073 0.37 0.001**
Psychosocial Health 0.09 0.412 0.36 0.001**
Total PedsQL 4.0 score 0.10 0.354 0.37 < 0.001***

Note: Kendall's Tau (τb) correlation analysis explores the relationship between the MABC‐2 total standard score and the children's self‐reported and parents' proxy HRQOL scores in the PedsQL 4.0. (* = significance level).

*

significant at p < 0.05.

**

significant at p < 0.01.

***

significant at p < 0.001.

The children were divided into two groups based on the MABC‐2 scores, children scoring above the 15th percentile (no motor difficulties, n = 31) and children below it (motor difficulties or at high risk, n = 14). The Mann–Whitney U test showed no significant differences between the groups for the children's PedsQL 4.0 Total scores; the median for the group above the 15th percentile was 87.1 (n = 31), and 88.5 for children below (n = 14, p = 0.098). However, parents' proxy reports revealed a significant difference, with those above the 15th percentile scoring higher, median 91.85 (n = 30), compared to children in the group below this percentile, median score 69.0 (n = 14, p = 0.004). Observe that one parental report is missing for the group of children scoring above the 15th percentile.

3.5. Motor Performance and Self‐Esteem

The Mann–Whitney U test was conducted to examine how motor performance influenced self‐esteem by comparing children scoring below the 15th percentile (existing or at risk of motor difficulties, n = 14) with those above (no motor difficulties, n = 31). The median ITIA‐2 score for the group below the 15th percentile was 7.5 (IQR 5 – 8), while the group above had a median score of 7.00 (IQR 5 – 8).

There was no significant difference in total ITIA‐2 scores between groups (U = 211, Z = −0.150, p = 0.881). Among the 24 children with the highest scores in the Relationship with Family subscale, six children (25%) had a motor outcome below the 15th percentile. For the Relationship with Others subscale, nine children out of 30 (30%) also fell below this threshold. In the ITIA‐2 Total score, 27 children scored in the highest range; eight (30%) of these children had a motor outcome from MABC‐2 below the 15th percentile. In the Physical Properties subscale, six out of 20 children (30%) had motor outcomes below the 15th percentile. These results indicate that children can achieve good self‐esteem scores despite having low motor outcomes.

4. Discussion

In the present study, children in early adolescence treated with TH as newborns reported a relatively high HRQOL. Their self‐esteem was also better compared to the test norm on a group level. Although a substantial number of children experienced motor difficulties, these challenges did not significantly affect their self‐reported HRQOL or self‐esteem. However, parents reported significant differences in HRQOL between children with and without motor difficulties, suggesting that motor performance influences parental perceptions of their child's Physical, Social and School Functioning. These findings show the importance of considering both the child's and the parents' perspectives, as their perceptions and assessments of factors, such as functioning, may differ [24]. The present study focused on associations between motor performance and HRQOL. In contrast, a study by Campbell et al. [12] from the Total Body Hypothermia for Neonatal Encephalopathy (TOBY) trial compared children with neonatal HIE treated with TH and children who only received intensive care. They found better outcomes in the TH‐treated group as reported by their parents [12]. These findings mainly reflect parents' proxy reports, as children themselves often tend to report higher HRQOL than their parents [27]. In contrast, our study showed that children scored higher in Psychosocial Health, though not consistently across all domains.

Despite the children in our study reporting positive HRQOL outcomes at group level, they nevertheless had challenges in specific areas. For instance, they had lower median scores in Physical and School Functioning in the PedsQL 4.0 compared to their parents' reports. These results show the need for specific support for individual difficulties, even when overall well‐being appears good. In a study by Erdi‐Krauz and Rocha et al. [13], parents scored Physical Functioning lower for children treated with TH, although these differences were not significant when compared to healthy controls [13]. Physical Functioning received a higher score from parents in the present study than parents in the Erdi–Krauz study. The difference in age and the use of median scores due to non‐normal data distribution in the present study may explain these variations. Parental well‐being and mental health could have affected the results of parents' proxy reports of their child's HRQOL, as parents who experience higher levels of personal emotional distress tend to report more negative results [28]. In a qualitative study, parents of children treated with TH as newborns narrated that when their child reached school age, they were still concerned about the child's prognosis [29]. Challenges that were sometimes not obvious at school were noticed at home. Some parents described struggles and difficulties in cooperating with school management when it came to interventions such as referrals to neuropsychiatric investigation or support from an assistant teacher at school [29].

Self‐esteem was measured using the ITIA‐2 questionnaire. Most of the children in the present study reported self‐esteem scores above the test norm. However, some children scored below the test norm, which indicates that despite generally positive outcomes, individual variations in self‐esteem remain that may require additional support. Eggleston et al. [30] found that love and support from family members were essential for promoting self‐esteem in children aged 7–18 years, with motor difficulties. In the present study, the highest ITIA‐2 scores were in the subscales of Relationships with Others and Relationships with Family, suggesting that supportive environments also play a key role in promoting self‐esteem among children with motor difficulties. Furthermore, a follow‐up study from the NICHD trial found no significant differences in parental assessments of psychosocial health, including self‐esteem, between children with moderate or severe HIE treated with TH and those who received standard care [8].

Children with motor difficulties often tend to avoid motor activities, which may negatively affect their self‐esteem and overall well‐being [17, 18]. We did not find any significant differences in self‐esteem between children with or at risk of motor difficulties compared to children with no motor difficulties. These findings indicate that motor difficulties, as measured by the MABC‐2, may not substantially influence children's self‐esteem. This could be due to several positive factors suggesting that motor difficulties may not be a primary cause of negative self‐esteem in this population. Factors such as psychosocial support, family dynamics, social environment, and individual flexibility may play a more important role in influencing self‐esteem than motor difficulties alone [14, 16].

Long‐term evaluation of a treatment such as TH on various aspects of children's functioning are important. It has been recommended that HRQOL assessments should be included in long‐term follow‐ups [31]. Our findings support this indicating that children with a history of neonatal HIE treated with TH showed high HRQOL and self‐esteem in early adolescence at group level. Motor performance did not seem to significantly affect their self‐reported HRQOL and self‐esteem. In comparison with the children's own perceptions of their HRQOL, those of their parents appear to be more influenced by motor difficulties. However, individual assessments remain important, as some children continue to face specific challenges that require targeted support.

4.1. Strengths and Limitations

Although the sample is small, this study is one of only a few to assess children in early adolescence with a history of neonatal HIE treated with TH. The present study provides an explorative insight into these children's long‐term well‐being and self‐esteem. By including parents' perceptions of their children's HRQOL, the study provides a more comprehensive understanding of the children's well‐being and functioning. One limitation is that we were unable to include a control group but instead used standardised and norm‐referenced tests and assessments. We could not adjust for the parental level of education or socio‐economic background due to a lack of this specific information. Finally, the study underscores the importance of performing further long‐term follow‐up studies to explore motor difficulties, HRQOL, and self‐esteem in adolescents with a history of TH‐treated HIE.

5. Conclusion

Based on our findings, which reveal a difference between parent and child reported outcomes, we recommend continued follow‐up of children treated with TH reaching adolescence, including HRQOL and self‐esteem. Long‐term assessment is necessary to identify possible challenges that may not be captured in early childhood or by self‐reports alone, ensuring that appropriate individual support is provided as needed throughout their development.

Author Contributions

All authors have made substantial contributions to this work. M.E.W., S.K.N., M.B., M.J. and K.L. were responsible for the conception and design of the project. The methodology was developed by M.E.W., S.K.N., M.B., M.J. and K.L. Validation of the results was carried out by K.L., M.J. and M.B. to ensure accuracy. Data analysis was performed by M.E.W. and S.K.N., while the assessments/tests were conducted by M.E.W. and consulting psychologist. Resources necessary for the project were provided by M.E.W., S.K.N., M.B., M.J. and K.L. Data management was organised and handled by M.E.W., S.K.N. and K.L. The initial draft of the manuscript was written by M.E.W. and S.K.N., and it was subsequently reviewed and edited by M.E.W., S.K.N., M.B., M.J., K.L. and an external language editor. Visualisation, including the creation of figures and tables, was done by M.E.W. and S.K.N. Supervision of the project was provided by M.B., M.J. and K.L., who also managed the project. Funding for the project was secured by M.E.W. and M.B. All authors have approved the submitted version and agree to be personally accountable for their contributions. They also ensure that any questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Conflicts of Interest

The authors declare no conflicts of interest.

Acknowledgements

We sincerely thank all the children and parents for their participation in this study. We also extend our gratitude to Gullvi Nilsson, external language editor, Michael Ingre, statistician, Peter Lagerroos, and Suzanna Lagerroos, psychologists, for their valuable contributions. We acknowledge methods of assistance in biostatistics from the Center for Bioinformatics and Biostatistics at Karolinska Institutet.

Funding: This work was supported by Stiftelsen Promobilia (A22055, A23011), Stiftelsen Sven Jerrings Fond, Linnéa och Josef Carlssons Stiftelse, Norrbacka‐Eugeniastiftelsen (820/20), (815/22) Majblommans Riksförbund, 2, Anna‐Lisa och Arne Gustafssons Stiftelse, Stiftelsen Samariten, Region Stockholm ALF (grant no. 510097) and Center for Innovative Medicine (project no. H9641193), and The Queen Silvia Jubilee Foundation.

Mimmi Eriksson Westblad and Sari Kokkonen Nassef Shared first authorship.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.


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