Health-related quality of life among paediatric patients with coarctation of the aorta: an observational study.

Advancements in early diagnosis and paediatric cardiac surgery have improved the long-term survival of patients with congenital heart disease, necessitating a thorough assessment of their health-related quality of life (HRQoL). This study aimed to assess HRQoL in paediatric patients with coarctation of the aorta (CoA) (both as reported by patients and caregivers), and to evaluate associated factors. Patients aged 5-18 years diagnosed with CoA and their parents were enrolled at Bambino Gesù Children's Hospital between September 2016 and December 2017. Socio-demographic characteristics were recorded using a family form, and the Pediatric Quality of Life Inventory (PedsQL) 3.0 cardiac module was used to evaluate HRQoL. Clinical data were retrieved from medical chart reviews. In this observational study, sixty-five pediatric patients (39 males, median [IQR] age 12 [9-14]) with CoA and their parents (65 mothers and 65 fathers) were enrolled. These patients exhibited overall good HRQoL. Mothers reported significantly lower total HRQoL scores compared to patient self-reports (p = .037), as well as treatment anxiety (p = .033), and cognitive problems (p = .021). Pediatric patients with CoA perceived their HRQoL better than their mothers did. Female sex and older age were associated with lower HRQoL scores.

Prevalence of anxiety and depression risk during the prepartum period in the different groups of women and responses from the Italian National Health Service.

BACKGROUND: Specific screening for anxiety and depression in pregnant women is important to identify those at risk and to provide timely intervention. The aims of the study were: 1) to compare the risk of anxiety and depression in four groups of pregnant women belonging to four types of healthcare centers distinguished by the level of risk: at low-risk; at high-risk for an obstetric reason; at high-risk for fetal anomalies; at high-risk for psychiatric conditions and 2) to identify the response that the National Health Service offers to women positively screened for anxiety and depression. METHODS: A cross-sectional study was conducted on 2801 pregnant women, cared for by National Health Service, divided into four groups: 1) low-risk pregnancy (N.=1970); 2) high-risk pregnancy for an obstetric reason (N.=218); 3) high-risk for fetal anomalies (N.=505); and 4) high-risk for psychiatric conditions (N.=108). Participants were screened using the Edinburgh Postnatal Depression Scale, the General Anxiety Disorder, and sociodemographic, anamnestic, and clinic questionnaires. RESULTS: 28.9% of participants obtained an EPDS Score ≥9 and 17.1% a GAD-7 Score ≥8. The group at high-risk for fetal anomalies presented the highest prevalence of anxiety (29.3%) and depression (49.1%) while the group at low risk presented the lowest prevalence of anxiety (13%) and depression (24.6%). The groups at risk for obstetric reasons presented an intermediate prevalence. Psychiatric conditions constituted a higher risk for anxiety than depression. Counselling is recommended for about 70% of women at risk for anxiety and depression. Moreover, about 15% of women positive for screening were initiated into psychotherapy and about 1.5% into pharmacotherapy. 15% of women positive for screening were referred to other specialists. CONCLUSIONS: This study underlined the relevance of a prompt response by the National Health Service to mental health needs, especially in the risk conditions related to obstetric and/or fetal anomalies and psychopathology.

Effects of live music during hemodialysis treatments in pediatric patients.

BACKGROUND: Engaging chronically ill pediatric patients with live music has been associated with improved physiological and psychological well-being. However, the impact of live music during hemodialysis treatments has yet to be assessed, in particular in pediatric patients. This study focuses on the effects of live music therapy during chronic hemodialysis treatment. METHODS: An experimental design with randomization was applied in this pilot study. A total of 16 participants with kidney failure requiring hemodialysis participated in the study. In addition to their usual care (N = 96 measurements), the patients in the experimental group listened to 30 min of live music during their hemodialysis procedure. The control group was observed for 30 min while they received their usual care (N = 96 measurements) and were exposed to a series of animated videos that were broadcast in the common room where hemodialysis treatment is performed. Data concerning heart rate, blood pressure, and levels of depression and anxiety were collected for analysis. RESULTS: Live music significantly reduced heart rate (p < 0.05), systolic pressure (p < 0.05) and diastolic pressure (p < 0.05). The findings also highlighted that, after listening to live music, there was a significant decrease in anxiety and depression (p < 0.05). CONCLUSIONS: In our small study sample, live music improved some physiological and psychological indices in pediatric hemodialysis patients. Further research evaluating larger samples with longitudinal follow-up is required.

Self-care in children and young people with complex chronic conditions: a qualitative study using Emotional Text Mining.

Objectives: To explore: (1) self-care behaviors in children and young people (range: 6 months-24 years) with complex chronic conditions, characterized by the diagnosis of a severe chronic condition, substantial family-identified needs, functional limitations associated with technology dependence, and intensive use of healthcare services; (2) the contribution to self-care of family members and other persons involved in the child's health and daily life context (e.g., health professionals and teachers), and (3) the principal factors that might have influenced the self-care process associated with developmental age. Methods: A qualitative descriptive study was conducted in an Italian academic tertiary pediatric hospital between September 2020 and May 2021. Overall, 25 focus groups and 7 online interviews were conducted via videoconferencing. Textual data were analyzed using Emotional Text Mining to identify three levels of communication: the factors, the main themes (clusters), and the sub-themes. Results: A total of 104 participants were enrolled, including 27 patients with complex chronic conditions (12 males, mean age = 11.1 ± 4.40), 33 parents, 6 siblings, 33 health professionals, and 5 teachers. Participants described the process of self-care through four main factors: "self-care", "external settings", "family", and "management". Five clusters (themes) were identified: (1) Self-care management (device; consulting); (2) Shift of agency (influencing factors; parents; school); (3) Self-care support (normal life and personal development; multidisciplinary support); (4) Daily self-care maintenance/monitoring; (5) Treatment adherence. Self-care management was mostly relevant for parents of children aged between 6 months and 3 years. Conclusion: The self-care process varies according to the needs related to the specific developmental age and the evolution of the clinical condition over time. The contribution of the family, health professionals, and social networks is fundamental for adequate self-care. To help families manage the unstable condition of their children at home, it is necessary to strengthen support networks implement home care, and ensure continuity of care.

Long-Term Effects of COVID-19 Pandemic on Migraine in Adolescents. A Retrospective Analysis of the Population Attending the Headache Center in Different Phases of the Pandemic.

BACKGROUND: Literature data report that the first COVID-19 pandemic had an impact on the progression of migraine both in adults and children. The present study aimed to verify how the migraine course and psychological aspects varied in adolescent patients in relation to some of the different phases of the COVID-19 pandemic and compared with the months before COVID-19. In addition, the relationship between the characteristics of headache episodes and psychological and school-related aspects were analyzed. METHODS: The study included 418 adolescents. Based on the timing of the evaluation, they were categorized into patients observed before the COVID-19 pandemic (pre COVID) or during the first (COVID 1) or second (COVID 2) wave of the pandemic. Subjects were also categorized into three further groups: those who had high or low frequency of migraine attacks during the month, those who had mild or severe pain during the attack, and those who were taking prophylactic drugs. The Patient Health Questionnaire-9 (PHQ-9) and General Anxiety Disorder-7 (GAD-7) scales were utilized to assess depression and anxiety. RESULTS: We observed a significant increase in the frequency of attacks and the use of prophylactic drugs during the COVID 2 period compared to the COVID 1 and pre-COVID periods (p < 0.05). Patients showed higher levels of anxiety and depression during each of the two COVID periods compared with the pre-COVID months (p < 0.05), especially during the COVID 2 period (p < 0.05). CONCLUSION: Our results show long-term negative impacts of the COVID-19 pandemic on clinical parameters and psychological symptoms in adolescents with migraine.

Psychological characteristics of juvenile fibromyalgia syndrome.

BACKGROUND: The aim of the study was to compare psychological characteristics of adolescent patients with juvenile fibromyalgia syndrome (JFM) with individuals suffering from chronic pain (CP) due to headache or joint pain in the lower limbs unrelated to oncological, inflammatory or autoimmune diseases. METHODS: The study was conducted on 37 patients aged 13-18 years old, monitored at the Pain Therapy Outpatient Clinic of the "Bambino Gesù" Pediatric Hospital in Rome. A total of 21 patients were suffering from CP (headache and recurrent arthralgia) and 16 from JFM, diagnosed according to the criteria of the American College of Rheumatology. All subjects were evaluated by a pain therapy specialist, a rheumatologist and a clinical psychologist for the following psycho-emotional areas and/ or characteristics: cognitive abilities, attention, memory, learning, alexithymia, somatisation, anxiety, depression, coping skills. A clinical psychologist interviewed all patients to assess school absences, the use of analgesic medication, the presence of sleep disorders (e.g., nonrestorative sleep) and the intensity of perceived pain. RESULTS: Similarities emerged between the two groups in the presence of depression, anxiety, somatisation, alexithymia, school absenteeism, medication use and reported pain level. The peculiar characteristics of the JFM group, which emerged from our pilot study, were the higher prevalence of the illness amongst women, a higher incidence of sleep disturbances, and a better cognitive endowment, despite some attention and mnemonic deficiencies. CONCLUSIONS: To conclude, the present study suggests that the clinical and psychological characteristics of JFM appear to be similar to those found in the CP population.

Secondary cytomegalovirus infections: How much do we still not know? Comparison of children with symptomatic congenital cytomegalovirus born to mothers with primary and secondary infection.

Congenital cytomegalovirus (cCMV) infection can follow primary and secondary maternal infection. Growing evidence indicate that secondary maternal infections contribute to a much greater proportion of symptomatic cCMV than was previously thought. We performed a monocentric retrospective study of babies with cCMV evaluated from August 2004 to February 2021; we compared data of symptomatic children born to mothers with primary or secondary infection, both at birth and during follow up. Among the 145 babies with available data about maternal infection, 53 were classified as having symptomatic cCMV and were included in the study: 40 babies were born to mothers with primary infection and 13 babies were born to mothers with secondary infection. Analyzing data at birth, we found no statistical differences in the rate of clinical findings in the two groups, except for unilateral sensorineural hearing loss (SNHL) which was significantly more frequent in patients born to mother with secondary infection than in those born to mother with primary infection (46.2 vs. 17.5%, P = 0.037). During follow up, we found a higher rate of many sequelae (tetraparesis, epilepsy, motor and speech delay, and unilateral SNHL) in the group of children born to mothers with secondary infection, with a statistical difference for tetraparesis and unilateral SNHL. Otherwise, only children born to mothers with primary infection presented bilateral SNHL both at birth and follow up. Our data suggest that the risk of symptomatic cCMV and long-term sequelae is similar in children born to mother with primary and secondary CMV infection; it is important to pay appropriate attention to seropositive mothers in order to prevent reinfection and to detect and possibly treat infected babies.

Depressive Anxiety Symptoms in Hospitalized Children with Chronic Illness during the First Italian COVID-19 Lockdown.

COVID-19 is continuing to spread around the world, having a direct impact on people's daily lives and health. Although the knowledge of the impact of the COVID-19 pandemic on mental health in the general population is now well established, there is less information on its effect on specific and vulnerable populations, such as children with chronic illness (CI). We conducted a multi-centered cross-sectional study among pediatric patients in six public children's hospitals in Italy during the first lockdown, with the aim of assessing the proportion of children with CI presenting anxiety and depressive symptoms, and the clinical and demographic characteristics affecting such symptomatology. We included children with at least one chronic condition, with no cognitive delay, aged between 11 and 18 years. Brief standardized questionnaires were administered during medical scheduled visits to screen anxiety and depressive symptoms. We found a very high proportion of children showing mild to severe depressive and anxiety symptomatology (approximately 68% and 63%, respectively). Our results highlight the need of ensuring tailored psychological interventions to protect children with CI from the effect of the pandemic (and related restrictive measures such as quarantine and social distancing), with the final aim of promoting mental health and psychological well-being in this vulnerable population.

Cognitive Difficulties, Psychological Symptoms, and Long Lasting Somatic Complaints in Adolescents with Previous SARS-CoV-2 Infection: A Telehealth Cross-Sectional Pilot Study.

BACKGROUND: Few studies have evaluated cognitive functioning and mental health in children and adolescents who contracted the SARS-CoV-2 infection. We investigated the prevalence and association of neuropsychological difficulties, psychological symptoms, and self-reported long-COVID complaints in a sample of adolescents. METHODS: Thirty-one adolescents infected by COVID-19 within 3-6 months prior to the assessment were included. Neuropsychological difficulties, psychological symptoms, and self-reported long-COVID complaints were evaluated using a checklist and a battery of multiple standardized measures, using a telehealth procedure. Symptoms during the infection were also detected. RESULTS: We included 31 adolescents (23 girls, 8 boys; mean age 14.1, SD = 2). We found borderline scores in 32.3% and 45.2% of our sample for phonemic and category fluency, respectively. A high percentage of participants showed symptoms of depression (80.6%) and anxiety (61.3%). Fifty-eight percent reported at least one long-COVID symptom. The most common symptoms were headache and attention problems (58%). Subjects presenting numbness/weakness, fatigue, brain fog, or attention problems had higher scores in depression, anxiety, and post-traumatic stress symptoms (p ≤ 0.05). CONCLUSION: This is a pilot study limited by the lack of control group. However, we found that cognitive, psychological, and physical symptoms were very common among adolescents recovered from COVID-19.

Health-related quality of life in Italian children and adolescents with congenital heart diseases.

BACKGROUND: Congenital heart disease (CHD) is the most common congenital anomaly at birth, affecting approximately 1% of live births. In recent decades great medical and surgical advances have significantly increased life expectancy, shifting healthcare professionals' and researchers' interests in patients' Quality of Life (QoL). The main aims of our study were to evaluate generic and condition-specific QoL in a group of Italian children and adolescents with CHD and their parents and examine the level of agreement and directional disagreement between child/adolescent and parents reports on generic and condition-specific QoL. METHODS: A cross-sectional study was designed with CHD children and adolescents and their parents referred to the Cardiology Department of "Bambino Gesù" Children's Hospital. The PedsQL scale was used, including generic (PedsQL 4.0) and cardiac-specific modules (PedsQL 3.0) were administered to patients and caregivers. A Kruskal-Wallis test was used to compare generic and cardiac module scores between patients with different ages, CHD diagnoses, and between patients who underwent surgery interventions and/or are currently taking cardiac medications. RESULTS: 498 families were enrolled in this study. On average, patients reported a good level of generic and condition-specific QoL, as well as their mothers and fathers. Children aged between 5-7 years old reported lower generic and cardiac-specific total QoL levels than children aged 8-12 years and adolescents (13-18 years). With regard to the agreement, patient-parent agreement on condition-specific QoL ranged from 25 to 75% while on generic QoL, it ranged from 19 to 76%. The highest percentage of disagreement between parents and children was found in patients aged 5-7 years old, both for condition-specific and generic QoL rates. CONCLUSIONS: Our study contributed to the growing body of knowledge on QoL in CHD, emphasizing the need for these families to receive support from multidisciplinary standardized care, including psychological consultations and support.

Intervention Programs to Promote the Quality of Caregiver-Child Interactions in Childcare: A Systematic Literature Review.

Sensitive caregiver-child interactions appear fundamental throughout childhood, supporting infants' wellbeing and development not only in a familial context but in professional caregiving as well. The main aim of this review was to examine the existing literature about Early Childhood Education Context (ECEC) intervention studies dedicated to caregiver-child interaction, fostering children's socioemotional developmental pathways. Studies published between January 2007 and July 2021 were identified in four electronic databases following PRIMSA guidelines. The initial search yielded a total of 342 records. Among them, 48 studies were fully reviewed. Finally, 18 of them met all inclusion criteria and formed the basis for this review. Main factors characterizing implemented programs were recorded (e.g., intervention and sample characteristics, dimensions of the teacher-child interaction targeted by the intervention, outcome variables, main results) in order to frame key elements of ECE intervention programs. Our review points to a range of fundamental issues that should consider to enhance ECEC interventions' efficacy, supporting children's socioemotional development and caregiver-child interaction. Reflections and considerations for future research are provided.

Neuropsychological Sequelae, Quality of Life and Adaptive Behavior in Children and Adolescents with Anti-NMDAR Encephalitis: A Narrative Review.

Anti-N-methyl-d-aspartate receptor (anti-NMDAR) encephalitis is a rare autoimmune illness characterized by a constellation of often severe, but treatable, psychiatric and neurological symptoms. Whereas symptoms such as psychosis and bizarre and abnormal motor behavior are common in adults, pediatric patients typically present with behavioral changes, irritability and sleep dysfunction. The recovery phase is usually slow and may be associated with longstanding adaptive, behavioral and neuropsychological problems. Very few studies explored the cognitive and adaptive sequelae in children with anti-NMDAR encephalitis. The present review article suggests that, although most children and adolescents return to their daily life and previous activities, they may have a low quality of life and show neuropsychological sequelae involving language, memory, especially verbal memory, and attentional resources, even after several months from the hospital discharge. In particular, the available results reveal difficulties in cognitive skills involving executive functions. This impairment is considered the "core" of the cognitive profile of young patients with anti-NMDAR encephalitis. On the other hand, some cognitive skills, such as general intelligence, show good overall recovery over time. Additional neuropsychological research evaluating larger samples, more homogenous methods and longitudinal studies is required.

Validity and reliability of the Italian version of the cardiac quality of life questionnaire for pediatric patients with heart disease (PedsQLTM).

BACKGROUND: Congenital heart disease (CHD) accounts for nearly a third of all major congenital anomalies. Advances in pediatric cardiology shifted attention from mortality to morbidity and health-related quality of life (HRQOL) of patients with CHD and impact on their families. The purposes of this study were to assess the validity and reliability of the Italian version of the Pediatric Quality of Life (PedsQL) Cardiac Module and to create normative data for the Italian population. METHODS: This was an observational cross-sectional study of pediatric patients (aged 2-18 years) with congenital or acquired Heart Disease (HD) and their parents. Families were asked to complete the cardiac pediatric health-related quality of life questionnaire (the Italian PedsQL™ 3.0 Cardiac Module) and the generic pediatric health-related quality of life questionnaire (PedsQL™ 4.0 Generic Core Scales). The sequential validation procedure of the original United States version of the PedsQL™ 3.0 Cardiac Module was carried out under the instruction of the MAPI Research Institute. To assess construct validity, Pearson's correlation coefficients were assessed between scores on the Cardiac Module scales and scores on the scales of the General Module. To determine agreement between patient self-report and parent proxy-report, we used intraclass correlation coefficients (ICCs). To evaluate Internal consistency of items, we used Cronbach's alpha Coefficient. RESULTS: The study enrolled 400 patients. Construct validity is good between PedsQL Cardiac Module total scores and PedsQL total scores (p < 0.001). The recommended standard value of 0.7 was reached on the Cardiac and General Module core scales. Intercorrelations between PedsQL Cardiac module and PedsQL scores revealed medium to large correlations. In general, correlations between Patient self-reports are poorer than Parent-proxy ones. CONCLUSIONS: Cardiac PedsQL scores are valid and reliable for pediatric patients with congenital and acquired HD and may be useful for future research and clinical management.

Self-Care in Pediatric Patients with Chronic Conditions: A Systematic Review of Theoretical Models.

BACKGROUND: To improve outcomes in children and young adults (CYAs) with chronic conditions, it is important to promote self-care through education and support. AIMS: (1) to retrieve the literature describing theories or conceptual models of self-care in CYAs with chronic conditions and (2) to develop a comprehensive framework. METHODS: A systematic literature search was conducted on nine databases, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. All peer-reviewed papers describing a theory or a conceptual model of self-care in CYAs (0-24 years) with chronic conditions were included. RESULTS: Of 2674 records, 17 met the inclusion criteria. Six papers included a theory or a model of self-care, self-management, or a similar concept. Six papers developed or revised pre-existing models or theories, while five papers did not directly focus on a specific model or a theory. Patients were CYAs, mainly with type 1 diabetes mellitus and asthma. Some relevant findings about self-care in CYAs with neurocognitive impairment and in those living with cancer may have been missed. CONCLUSIONS: By aggregating the key elements of the 13 self-care conceptual models identified in the review, we developed a new overarching model emphasizing the shift of self-care agency from family to patients as main actors of their self-management process. The model describes influencing factors, self-care behaviors, and outcomes; the more patients engaged in self-care behaviors, the more the outcomes were favorable.

Predicting Adolescent Depression: The Interrelated Roles of Self-Esteem and Interpersonal Stressors.

Depression in adolescents can lead to social and educational impairment and is a major risk factor for suicide and substance misuse. Thus, predicting and preventing this disorder are extremely important. The current study aimed to analyze the contribution of adolescents' self-esteem (i.e., quality of interpersonal relationships, control of life events, and management of negative emotions) and interpersonal stressor sources (relationships with parents, teachers, classmates and friends) in predicting several depression manifestations (i.e., depressed mood, sense of inadequacy, and insecurity). Participants were 182 Italian pre-adolescents and adolescents, aged 10-14 years, were recruited from three Italian schools. They were asked to complete a self-report questionnaire. Results showed that self-esteem was a major factor to be considered in adolescents' depression. In particular, adolescents' perception of negative emotion management was the most important protective factor against depression manifestations. Conversely, sources of interpersonal stressors contributed only marginally to depression. Among these, problems with parents and friends increased adolescents' depressed mood, while troubles with classmates impacted on their sense of inadequacy and insecurity. Implications of these results for positive practices which could enhance adolescents' self-esteem and further expansions of the study are discussed.

Children's Mathematics and Verbal Self-concepts and Externalizing Behaviors: The Moderating Role of Peer Rejection at School.

Previous research has found a strong correlation between children's academic self-concept and their behavioral problems. The present study examined whether children's peer rejection moderated the relationship between children's math and verbal self-concepts and their behavioral problems at school. We expected that children's social competence, as measured by peer rejection, moderated the negative effect of low self-concept on children's externalizing behaviors. Participants were 173 children (males = 93, Mage = 10.31 years, SD = 1.43). The main findings showed that peer rejection moderated the effect of both low verbal and math self-concepts on children's externalizing behavior. The results are discussed in terms of the protective factor played by children's social competence reducing the impact of low self-concept on children's externalizing behaviors.

What factors influence parents' perception of the quality of life of children and adolescents with neurocardiogenic syncope?

BACKGROUND: Health-related quality of life, which can be investigated using self-reports or parental reports, could help healthcare providers understand the subjective perception of well-being of children suffering from recurrent syncopal episodes. Quality of life is not only a measure of health but is also a reflection of patients' and parents' perceptions and expectations of health. This study assessed: 1) the consistency and agreement between pediatric patients' self-reports and parents' proxy-reports of their child's quality of life; 2) whether this patient-parent agreement is dependent on additional demographic and clinical or distress factors; 3) whether the parents' psychological distress influences children's and parents' responses to questionnaires on quality of life. METHODS: One hundred and twenty-five Italian children aged 6-18 years old (Mean age 12.75, SD 2.73, 48 % female) and their parents completed the Pediatric Quality of Life inventory with self-reports and parent-proxy reports, the Parenting Stress Index - Short Form questionnaire and the Child Behavior Checklist for ages 6-18. Patients' and parents' scores on quality of life were analyzed via an intra-class correlation coefficient, Spearman's correlation coefficient, Wilcoxon signed-rank test, and Bland-Altman plot. RESULTS: Child-rated quality of life was lower than parent-rated quality of life. However, there were no statistically significant differences between pediatric patients' self-reports and their parents' proxy-reports of on quality of life. Clinically significant patient-parent variation in pediatric health-related quality of life was observed. Differences in patient-parent proxy Pediatric Quality of Life inventory Total Scale Score scores were significantly associated with patient age. CONCLUSION: Concerning parents' proxy-ratings of their children's quality of life on the Pediatric Quality of Life inventory, parental stress was found to be negatively associated with their perceptions of their child's psychological quality of life. Indeed, childhood illness is a source of stress for the whole family, and exposes family members to a greater risk of developing psychosocial difficulties. In conclusion, this study invites reflection on the use of cross-informants in investigating the quality of life of young patients with neurocardiogenic syncope and the psychological factors that influence how quality of life is perceived.