Introduction: The numbers of children and young people living with chronic conditions are rising, with many experiencing significant functional limitations and complex healthcare needs. As life expectancy improves, there is a growing need to support families in managing care at home and promoting age-appropriate self-care behaviors. Existing frameworks provide evidence that self-care is essential for maintaining health, monitoring and managing changes, as it evolves with the child's development. Few instruments comprehensively assess self-care in pediatric populations or consider the role of parents. Objective(s): To develop and initially validate an instrument designed to assess self-care behaviors in children and young people with complex chronic conditions, and the contribution of their parents across different developmental stages. Methods: This initial validation study, conducted between 2022 and 2023, included four phases: 1) scale development based on theoretical evidence; 2) content and face validation through expert interviews; 3) calculation of Content Validity Indexes; and 4) cognitive interviews for face validity. Eleven variants of the instrument were developed to tailor it to five age groups and addressed three core dimensions of self-care: maintenance, monitoring, and management. Eighty-six expert participants (healthcare providers, parents, and patients) took part in phases 2 and 3, while cognitive interviews were conducted with 5 patients and 13 parents in phase 4. Statistical analyses included Item-Content Validity Indexes and Scale-Content Validity Indexes. Results: The final instrument, with an average of 37 items per variant, showed strong content validity, with Scale-Content Validity Indexes ranging from 0.91 to 0.98 and Item-Content Validity Indexes between 0.63 and 1. Minimal item revisions were made based on experts’ feedback. The instrument demonstrated good face validity and feasibility for online administration, with completion times between 6 and 14 min. Discussion: A new comprehensive instrument that measures self-care behaviors in children and young people with complex chronic conditions and the contribution of parents was developed, considering the various developmental stages. Initial evidence supports its content and face validity. Study registration: The study was ‘not registered’ in any public registry.
Abstract Background The number of people living with congenital heart disease (CHD) in 2017 was estimated to be 12 million, which was 19% higher than that in 1990. However, their death rate declined by 35%, emphasizing the importance of monitoring their quality of life due to its impact on several patient outcomes. The main objective of this study is to analyze how parents’ psychosocial factors contribute to children’s and adolescents' perceptions of their QoL, focusing on their medical condition. More specifically, we explore how parental psychological dimensions, such as anxiety and depression, are related to patients’ health-related quality of life (HRQoL). Methods We recruited 447 children aged 5 to 18 years with a CHD diagnosis and their parents (319 mothers and 229 fathers) from January to December 2018. Patients were referred to the Cardiology Department of “Bambino Gesù” Children’s Hospital and participated in multidisciplinary standardized follow-up. Children and adolescents were submitted to a comprehensive evaluation by different physicians, including pediatric cardiologists, surgeons, and psychologists, at preset time frames. A series of standardized questionnaires were administered during psychological assessment. Results The main findings show a negative correlation between mothers’ anxiety and three patients' HRQoL subscales (Treatment II, Treatment anxiety, and Communication). Similarly, mothers’ depression correlates negatively with other patients’ HRQoL subscales (heart problems, symptoms, perceived physical appearance, cognitive problems, and communication). Fathers' anxiety and depression show negative correlations with only the subscale of Treatment II. More generally, the perceived quality of life of children and adolescents with CHD is influenced by their medical conditions as well as the parents’ psychological dimensions. Conclusions Our findings suggest that the caregivers of pediatric patients with CHD are more exposed to psychological problems of anxiety and depression, which affect the perceived quality of life of their children. Longitudinal research with a healthy control group is recommended to further consolidate this evidence.
The rapid expansion of social media and digital device use has created a new phenomenon: Problematic Internet Use (PIU). Numerous studies have explored the potential impact of digital use on the self-esteem and well-being of users. This systematic review examines and synthesizes the findings of studies that have investigated the possible outcomes of self-esteem, anxiety, depression, and loneliness. A search on PsycINFO, PubMed, and Scopus identified 37 eligible studies that investigated these variables in a sample of adults (18 years and above). The findings from these studies were categorized based on their impact on self-esteem, anxiety, depression, and loneliness. They reported the relationship of these variables with other interesting factors such as Fear of Missing out (FoMo), social anxiety, emotional investment, and differences between young adults and older adults and the differences based on gender. However, the studies included in the review have limitations, such as small sample sizes, cross-sectional design, and self-reporting to evaluate the possible consequences. To gain a deeper understanding of the mechanisms underlying the relationship between digital use and its impact on users, future studies must investigate this relationship through qualitative and longitudinal studies.
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 Ges & ugrave; 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.
Background: Stable parent-infant relationships and adequate ordinary care significantly support children’s development since the very early stages of life. Principal models of intervention sustain parental skills and foster quality of parent-infant interactions since the early infancy. Standardized programs, with a well-defined focus, of short duration, based on specific methods and techniques, represent an effective tool in supporting parental effort. The present pilot study provides a description and an initial evaluation of the brief online “Con i Genitori” (CiG) Intervention, aimed to enhance parental sensitivity, self-efficacy and reduce stress in parents of typically-developed children aging 0-6 years. Methods: The intervention involved parents of typically-developed children aging 0-6 years. Four interactive group sessions, based on well-known empirically-based programs’ assumptions were delivered. Participants were asked to complete questionnaires at baseline (T0) and after CiG (T1). The assessment included the Tool to measure Parenting Self-Efficacy (TOPSE; Kendall Bloomfield, 2005), Parenting Stress Index-SF for parental distress (PSI; Abidin, 1996), Emotional Regulation Checklist for children’s emotional regulation (ERC; Shields Cicchetti et al., 1997) and Social Provision Scale for social support (SPS; Cutrona and Russell, 1987). A weekly “ad-hoc” questionnaire evaluated parental sensitivity. Moreover, a semi-structured interview measured participants’ satisfaction and acceptability with the intervention one month after its end. Results: Twelve parents completed all the sessions of the CiG (10 mothers, 2 fathers with mean age = 42.7; SD= 6.3). Children mean age was 3.9 (SD=1.9), 58.3% male. Our results showed statistically significant decrease in parental distress and increased social support after attending CiG. No statistically significant variations were detected considering parental self-efficacy. Conclusions: Our findings confirm the potential value of online-delivered interventions targeting parenthood in infancy, supporting parent-infant relationship and positive parenting from early infancy in a public health community approach. Online delivered programs constitute an important resource for addressing unmet parent mental health needs, which may be particularly widespread following the COVID-19 pandemic, representing a valuable alternative to traditional face-to-face interventions targeting parental wellbeing in infancy.
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.
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 Gesu" 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.
Parents are the main contributor to the development of children's sleep patterns. Familial disorders and parental difficulties could represent a risk factor for children's sleep onset and maintenance, interfering with their emotional self-regulation strategies. This study investigated whether aspects of parental post-partum depression, agreement between parental perceptions of co-parenting quality, and infants' at-risk health conditions, explain infants' longest continuous sleep bouts reported by parents. We enrolled 95 Italian families (33 had children with congenital anomalies) with children aged 8-12 months. A significant effect of post-partum depressive dimensions emerged. Moreover, parental similarities in co-parenting quality moderated the relationship between post-partum depressive dimensions and infants' sleep in both families with healthy and at-risk children. Our results will deepen our understanding of the risks and protective factors related to children's sleep for families, healthcare providers, and the general public.
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.
Organic acidurias (OAs), urea-cycle disorders (UCDs), and maple syrup urine disease (MSUD) belong to the category of intoxication-type inborn errors of metabolism (IT-IEM). Liver transplantation (LTx) is increasingly utilized in IT-IEM. However, its impact has been mainly focused on clinical outcome measures and rarely on health-related quality of life (HRQoL). Aim of the study was to investigate the impact of LTx on HrQoL in IT-IEMs. This single center prospective study involved 32 patients (15 OA, 11 UCD, 6 MSUD; median age at LTx 3.0 years, range 0.8-26.0). HRQoL was assessed pre/post transplantation by PedsQL-General Module 4.0 and by MetabQoL 1.0, a specifically designed tool for IT-IEM. PedsQL highlighted significant post-LTx improvements in total and physical functioning in both patients' and parents' scores. According to age at transplantation (& LE;3 vs. >3 years), younger patients showed higher post-LTx scores on Physical (p = 0.03), Social (p < 0.001), and Total (p =0.007) functioning. MetabQoL confirmed significant post-LTx changes in Total and Physical functioning in both patients and parents scores (p & LE; 0.009). Differently from PedsQL, MetabQoL Mental (patients p = 0.013, parents p = 0.03) and Social scores (patients p = 0.02, parents p = 0.012) were significantly higher post-LTx. Significant improvements (p = 0.001-0.04) were also detected both in self- and proxy-reports for almost all MetabQoL subscales. This study shows the importance of assessing the impact of transplantation on HrQoL, a meaningful outcome reflecting patients' wellbeing. LTx is associated with significant improvements of HrQol in both self- and parent-reports. The comparison between PedsQL-GM and MetabQoL highlighted that MetabQoL demonstrated higher sensitivity in the assessment of disease-specific domains than the generic PedsQL tool.
Background Psychological factors influence quality of life, disease perception, engagement and adherence to treatment in patients with Juvenile Idiopathic Arthritis (JIA). While anxiety and/or depression have been often documented in JIA, alexithymia has been seldom investigated. Objectives 1.To investigate the frequency of psychic symptoms in JIA patients at a single tertiary care center, including depressive, anxiety and alexithymic symptoms. 2.To investigate correlation between psychic symptoms and demographic and clinical parameters. Methods JIA patients aged 8-17 years and consecutively seen from March to November 2022 were invited to undergo psychological standardized tests: the Patient Health Questionnaire-9 items (PHQ9), self-administered measure of depressive symptoms; the Generalised Anxiety Disorder (GAD7) test; the Self-administered Psychiatric Scales for Children and Adolescents anxiety-related areas (SAFA-A), depression-related areas (SAFA-D) and somatic areas (SAFA-S); the PedsQL™ Multidimensional Fatigue Scale; PedsQL™ Rheumatology Module Pain and Hurt; the Toronto Alexithymia Scale (TAS-20); the Visual Analogue Scale (VAS) for pain intensity. Demographic data, clinical and laboratory parameters for disease assessment on the same visit were also recorded. Data were analyzed with descriptive statistics. Categorical data were represented as counts and percentages, while continuous data were represented as means and standard deviations or medians and ranges. Data were checked for normality. For normally distributed data, appropriate parametric statistical testes were employed, for non normally distributed data, non-parametric statistical tests were employed. Comparison in the frequency of the psychological symptoms in presence/absence of pain, active, painful/tender or limited joints was assessed. Significant level was set at p<0.05. All statistical analyses were performed using R (version R 4.0.3). Results Thirty-seven JIA patients were enrolled in the study: 64.9% were females, 38% with persistent oligoarthritis, 22% extended oligoarthritis and 40% polyarthritis, and 32% with chronic uveitis ever. Median age was of 12.6 years (IQR 9.3-15.3), with a median disease duration of 5.5 years (IQR 3.6-7.6). Respectiveley, 96% and 95% of patients were receiving csDMARDS and bDMARDS. All disease parameters showed very low level of disease activity and disability. PHQ9 and GAD7 were pathologic in 41% and 44%, respectively; borderline or clinically pathologic scores were found in 27%, 29%, and 13% for SAFA-D, SAFA-A, SAFA-S, respectively. Of note, TAS-20 was borderline or pathologic in 32% of patients. No psychic symptoms, demographic variables or clinical features showed an association with disease parameters. No significant differences were found between patients with and without pain on VAS, active joints, painful/tender or limited joints. Conclusion In a selected cohort of JIA patients on intensive treatment, low disease activity and few limited joints psychological parameters for depression and anxiety were detectable in a sizable proportion; a higher percentage of patients reported fatigue; alexithymia was even more frequent, regardless disease assessment variables. Our findings support the rationale for adopting routine psychological assessment and intervention in JIA patients, and for extending psychological investigations to their parents/guardians. References [1]Fair DC. Open Access Rheumatol 2019;11:237–52 doi: 10.2147/OARR.S174408 [2]Bano S. Cureus 12: e6807 doi: 10.7759/cureus.6807 [3]Cobham VE. J Am Acad Child Adolesc Psychiatry 2020;59:595–618 doi: 10.1016/j.jaac.2019.10.010 [4]Badarnee M. J Psychol 2022;63:624-633 doi: 10.1111/sjop.12839 Acknowledgements Acknowledgements to Aurora Pucacco, HRP at the Rheumatology Division of the IRCCS Bambino Gesù Children’s Hospital, for her logistic support during the study and daily care of JIA patients and families. Disclosure of Interests None declared.
Background: Hypoxic-ischemic encephalopathy (HIE) is a severe pathology, and no unique predictive biomarker has been identified. Our aims are to identify associations of perinatal and outcome parameters with morphological anomalies and ADC values from MRI. The secondary aims are to define a predictive ADC threshold value and detect ADC value fluctuations between MRIs acquired within 7 days (MR0) and at 1 year (MR1) of birth in relation to perinatal and outcome parameters. Methods: Fifty-one term children affected by moderate HIE treated with hypothermia and undergoing MRI0 and MRI1 were recruited. Brain MRIs were evaluated through the van Rooij score, while ADC maps were co-registered on a standardized cerebral surface, on which 29 ROIs were drawn. Statistical analysis was performed in Matlab, with the statistical significance value at 0.05. Results: ADC0 < ADC1 in the left and right thalami, left and right frontal white matter, right visual cortex, and the left dentate nucleus of children showing abnormal perinatal and neurodevelopmental parameters. At ROC analysis, the best prognostic ADC cut-off value was 1.535 mm2/s × 10−6 (sensitivity 80%, specificity 86%) in the right frontal white matter. ADC1 > ADC0 in the right visual cortex and left dentate nucleus, positively correlated with multiple abnormal perinatal and neurodevelopmental parameters. The van Rooij score was significantly higher in children presenting with sleep disorders. Conclusions: ADC values could be used as prognostic biomarkers to predict children’s neurodevelopmental outcomes. Further studies are needed to address these crucial topics and validate our results. Early and multidisciplinary perinatal evaluation and the subsequent re-assessment of children are pivotal to identify physical and neuropsychological disorders to guarantee early and tailored therapy.
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.
ObjectivesTo 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.MethodsA 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.ResultsA 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.ConclusionThe 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.
Poor sleep quality represents a concern commonly reported by parents during the first year of life and is longitudinally related to problems with children's cognitive, emotional, and behavioural development. According to research, several intrinsic and extrinsic factors intervene in helping or hindering sleep quality during early childhood. In particular, the relationship between parental mental health, infants' temperament, their at-risk health conditions, and sleep quality has not been investigated yet, especially in the Italian population. 100 Italian heterosexual couples, with infants aged from 8 to 12 months were involved in this study and completed self-report questionnaires: the Brief Infant Sleep Questionnaire (BISQ), the Italian Temperament Questionnaires (QUIT - version 0-12 months), the Edinburgh Postnatal Depression Scale (EPDS). 58 couples had healthy children and were recruited from kindergartens located in Rome, Italy. 42 couples had children born with congenital anomalies requiring surgery at birth and were recruited at Bambino Gesu Children's Hospital, Rome, Italy. Results highlighted similar sleep outcomes between clinical and healthy children. Furthermore, they showed that children's insomnia symptoms resulted associated with children's temperamental negative emotionality, parental postpartum depression symptoms, and constant bedtime routines in both groups. In conclusion, this study can raise awareness and enhance understanding of risk and protective factors for infants' sleep, among families, education practitioners, healthcare providers, and the general public.
Cognitive and executive function impairment as well as the association between executive functions and dystrophin gene mutation position have been widely investigated in individuals with Duchenne muscular dystrophy, whereas few studies explored these functions in Becker muscular dystrophy patients. The aim of this study is to investigate the neuropsychological and behavioral profile in a cohort of Becker muscular dystrophy patients and whether there is any correlation with site of dystrophin gene mutation. This is a single-center, observational, cross-sectional study in which a full neuropsychological assessment, including intellectual functioning, executive functions, and language abilities, was performed in children and adolescents without cognitive impairment. A comparison between groups based on site of mutation or Intelligence Quotient level was attempted. 22 patients were enrolled. Overall, the patients in our cohort did not perform well in tests investigating the executive functions. No statistically significant difference was found in groups stratified by site of mutation or cognitive level. This study confirms that these patients have a risk of impairment of the executive functions, despite having a normal Intelligence Quotient in most cases (mean 94). This is a very important aspect, as it puts them at risk of developing learning disabilities.
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.
Abstract 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.
Primary headache is a very common and disabling disease. The burden of pain and recurrent attacks may lead to a poor quality of life, anxiety and depression. An increased risk of low functioning and curricular performances in young patients with primary headache has been described. The mechanisms underlying the relationship between migraine and poor school achievement may be various and could be a reflection of weak cognitive skills. Data concerning the cognitive functioning in the free pain interval in pediatric age are under-investigated and results are far from conclusive. The present review article suggests that, though considered a benign disease, pediatric migraine may be associated to altered neuropsychological functioning in the interictal phase. Although children and adolescents with migraine generally have a normal intelligence, they may show a not homogeneous cognitive profile, characterized by possible difficulties in verbal skills, in particular comprehension abilities. Pediatric primary headache may present altered neuropsychological functioning involving attentional resources, processing speed and memory, particularly verbal memory. Given the impact that this disease can have on school performance and the tendency to persist from childhood to adulthood, a cognitive screening in young patients affected by primary headache is pivotal. Additional neuropsychological research using more homogenous methods is needed.
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.