International Care programs for Pediatric Post-COVID Condition (Long COVID) and the way forward.

BACKGROUND: Pediatric Post-COVID-Condition (PPCC) clinics treat children despite limited scientific substantiation. By exploring real-life management of children diagnosed with PPCC, the International Post-COVID-Condition in Children Collaboration (IP4C) aimed to provide guidance for future PPCC care. METHODS: We performed a cross-sectional international, multicenter study on used PPCC definitions; the organization of PPCC care programs and patients characteristics. We compared aggregated data from PPCC cohorts and identified priorities to improve PPCC care. RESULTS: Ten PPCC care programs and six COVID-19 follow-up research cohorts participated. Aggregated data from 584 PPCC patients was analyzed. The most common symptoms included fatigue (71%), headache (55%), concentration difficulties (53%), and brain fog (48%). Severe limitations in daily life were reported in 31% of patients. Most PPCC care programs organized in-person visits with multidisciplinary teams. Diagnostic testing for respiratory and cardiac morbidity was most frequently performed and seldom abnormal. Treatment was often limited to physical therapy and psychological support. CONCLUSIONS: We found substantial heterogeneity in both the diagnostics and management of PPCC, possibly explained by scarce scientific evidence and lack of standardized care. We present a list of components which future guidelines should address, and outline priorities concerning PPCC care pathways, research and international collaboration. IMPACT: Pediatric Post-COVID Condition (PPCC) Care programs have been initiated in many countries. Children with PPCC in different countries are affected by similar symptoms, limiting many to participate in daily life. There is substantial heterogeneity in diagnostic testing. Access to specific diagnostic tests is required to identify some long-term COVID-19 sequelae. Treatments provided were limited to physical therapy and psychological support. This study emphasizes the need for evidence-based diagnostics and treatment of PPCC. The International Post-COVID Collaboration for Children (IP4C) provides guidance for guideline development and introduces a framework of priorities for PPCC care and research, to improve PPCC outcomes.

X-linked Malformation Deafness: Neurodevelopmental Symptoms Are Common in Children With IP3 Malformation and Mutation in POU3F4.

OBJECTIVE: Incomplete partition type 3 (IP3) malformation deafness is a rare hereditary cause of congenital or rapid progressive hearing loss. The children present with a severe to profound mixed hearing loss and temporal bone imaging show a typical inner ear malformation classified as IP3. Cochlear implantation is one option of hearing restoration in severe cases. Little is known about other specific difficulties these children might exhibit, for instance possible neurodevelopmental symptoms. MATERIAL AND METHODS: Ten 2; 0 to 9; 6-year-old children with IP3 malformation deafness (nine boys and one girl) with cochlear implants were evaluated with a retrospective chart review in combination with an additional extensive multidisciplinary assessment day. Hearing, language, cognition, and mental ill-health were compared with a control group of ten 1; 6 to 14; 5-year-old children with cochlear implants (seven boys and three girls) with another genetic cause of deafness, mutations in the GJB2 gene. RESULTS: Mutations in POU3F4 were found in nine of the 10 children with IP3 malformation. Children with IP3 malformation deafness had an atypical outcome with low level of speech recognition (especially in noise), executive functioning deficits, delayed or impaired speech as well as atypical lexical-semantic and pragmatic abilities, and exhibited mental ill-health issues. Parents of children with IP3 malformation were more likely to report that they were worried about their child's psychosocial wellbeing. Controls, however, had more age-typical results in all these domains. Eight of 10 children in the experimental group had high nonverbal cognitive ability despite their broad range of neurodevelopmental symptoms. CONCLUSIONS: While cochlear implantation is a feasible alternative for children with IP3 malformation deafness, co-occurring neurodevelopmental anomalies, such as attention deficit hyperactivity or developmental language disorder, and mental ill-health issues require an extensive and consistent multidisciplinary team approach during childhood to support their overall habilitation.

Being between life and death-experiences of COVID-19 survivors 12 to 18 months after being treated in intensive care.

PURPOSE: This study aims to explore the experiences of care, psychosocial support, and psychosocial wellbeing among patients treated for COVID-19 in intensive care 12 to 18 months after discharge. METHODS: This study used a qualitative approach with a descriptive design. Semi-structured interviews were performed with 20 adult patients treated for COVID-19 12 to 18 months after being discharged from a university hospital in Sweden. Data were analysed using qualitative content analysis. FINDINGS: The participants were severely affected by COVID-19 both during the hospital stay and afterwards. They experienced overwhelming fears and uncertainties related to their wellbeing and possibility to recover. The care was described chaotic with staff that were stressed; however, the efforts of the staff during this strenuous circumstance were still positively acknowledged. Difficulties to stay in touch with family and friends due to visiting restrictions affected the patient's psychosocial wellbeing. CONCLUSION: Contracting COVID-19 in the beginning of the pandemic was a stressful event. Being seen and heard is of importance as it has the possibility to create a feeling of security and being cared for despite unclarities about treatment and illness trajectory. Accordingly, healthcare staff play an important role for the psychosocial wellbeing of patients treated for COVID-19.

Gender differences in caregiver's use of spoken language with young children who are hard-of-hearing.

PURPOSE: Shared parenting among caregivers of different gender is common in the Swedish society. It is unclear if this includes shared contribution for children's language development. The objective of this cross-sectional study was to explore the natural language environment of children who were hard-of-hearing compared to typically hearing controls. METHODS: Seventy-two families with children aged 7-35 months participated; 22 children who were hard-of-hearing (Cochlear implants, n=11; Hearing aids, n=11) and 50 controls with typical hearing. The majority of caregivers had higher education background level, especially in the control group. Families conducted a daylong recording with the Language Environment Analysis technology, when both parents were present at home. An Interpreted Time Segmental analysis was performed to extract information about female versus male caregivers quantitative word use. RESULTS: The results showed significant gender differences related to number of adult words, with less male words than female words (p <0.001). Male caregivers of children who were hard-of-hearing contributed with around 27 % of adult words during the recordings while males in the control group contributed with 37 %. There was a larger variation in number of female words in the study group than for controls, especially in mothers of children with cochlear implants. CONCLUSIONS: Female caregivers talk significantly more close to young children than male caregivers, and especially in the subgroup of children with cochlear implants. Children who are hard-of-hearing are dependent on a rich language environment, and might be especially vulnerable if male caregivers are less involved as language facilitators. More studies are needed to explore caregiver gender differences, both related to quantitative and qualitative language stimulation.

Executive Functions, Pragmatic Skills, and Mental Health in Children With Congenital Cytomegalovirus (CMV) Infection With Cochlear Implants: A Pilot Study.

Congenital cytomegalovirus (cCMV) infection is the most common cause of progressive hearing impairment. In our previous study around 90% of children with a cCMV infection and CI had severely damaged balance functions (Karltorp et al., 2014). Around 20% had vision impairment, 15% were diagnosed with Autism-Spectrum-Disorder, and 20% with ADHD. One clinical observation was that children with cCMV infection had problems with executive functioning (EF), while controls with a genetic cause of deafness (Connexin 26 mutations; Cx26) did not have similar difficulties. A follow-up study was therefore initiated with the main objective to examine EF and pragmatic skills in relation to mental health in children with a cCMV infection and to draw a comparison with matched controls with Cx26 mutations (age, sex, hearing, non-verbal cognitive ability, vocabulary, and socioeconomic status level). Ten children with a cCMV infection and CI (4.8-12:9 years) and seven children with CI (4:8-12:8 years) participated in the study, which had a multidisciplinary approach. Executive functioning was assessed both with formal tests targeting working memory and attention, parent and teacher questionnaires, and a systematic observation by a blinded psychologist during one test situation. Pragmatics and mental health were investigated with parent and teacher reports. In addition, the early language outcome was considered in non-parametric correlation analyses examining the possible relationships between later EF skills, pragmatics, and mental health. Children with cCMV had a statistically significant worse pragmatic outcome and phonological working memory than controls despite their groups having similar non-verbal cognitive ability and vocabulary. However, there were no statistical differences between the groups regarding their EF skills in everyday settings and mental health. There were associations between early language outcomes and later EF skills and pragmatics in the whole sample. Conclusion: Children with a cCMV infection are at risk of developing learning difficulties in school due to difficulties with phonological working memory and pragmatic skills in social interactions.

Correlates of Orthographic Learning in Swedish Children With Cochlear Implants.

This study set out to explore the cognitive and linguistic correlates of orthographic learning in a group of 32 deaf and hard of hearing children with cochlear implants, to better understand the factors that affect the development of fluent reading in these children. To date, the research about the mechanisms of reading fluency and orthographic learning in this population is scarce. The children were between 6:0 and 10:11 years of age and used oral language as their primary mode of communication. They were assessed on orthographic learning, reading fluency and a range of cognitive and linguistic skills including working memory measures, word retrieval and paired associate learning. The results were analyzed in a set of correlation analyses. In line with previous findings from children with typical hearing, orthographic learning was strongly correlated with phonological decoding, receptive vocabulary, phonological skills, verbal-verbal paired-associate learning and word retrieval. The results of this study suggest that orthographic learning in children with CI is strongly dependent on similar cognitive and linguistic skills as in typically hearing peers. Efforts should thus be made to support phonological decoding skill, vocabulary, and phonological skills in this population.

Predictors of Reading Comprehension in Children With Cochlear Implants.

Children with a profound hearing loss who have been implanted with cochlear implants (CI), vary in terms of their language and reading skills. Some of these children have strong language skills and are proficient readers whereas others struggle with language and both the decoding and comprehension aspects of reading. Reading comprehension is dependent on a number of skills where decoding, spoken language comprehension and receptive vocabulary have been found to be the strongest predictors of performance. Children with CI have generally been found to perform more poorly than typically hearing peers on most predictors of reading comprehension including word decoding, vocabulary and spoken language comprehension, as well as working memory. The purpose of the current study was to investigate the relationships between reading comprehension and a number of predictor variables in a sample of twenty-nine 11-12-year-old children with profound hearing loss, fitted with CI. We were particularly interested in the extent to which reading comprehension in children with CI at this age is dependent on decoding and receptive vocabulary. The predictor variables that we set out to study were word decoding, receptive vocabulary, phonological skills, and working memory. A second purpose was to explore the relationships between reading comprehension and demographic factors, i.e., parental education, speech perception and age of implantation. The results from these 29 children indicate that receptive vocabulary is the most influential predictor of reading comprehension in this group of children although phonological decoding is, of course, fundamental.

X-linked Malformation and Cochlear Implantation.

OBJECTIVE: To evaluate if cochlear implantation is safe and constitutes an option for hearing rehabilitation of children with x-linked inner ear malformation. STUDY DESIGN: Retrospective patient review in combination with a multidisciplinary follow-up. SETTING: Tertiary referral hospital and cochlear implant program. PATIENTS: Ten children with severe-profound mixed hearing loss and radiological findings consistent with Incomplete Partition type 3 cochlear malformation received cochlear implants during the years 2007 to 2015. Nine of the children had a mutation affecting the gene POU3F4 on Xq21. INTERVENTION: Cochlear implantation. MAIN OUTCOME MEASURES: Surgical events, intraoperative measures and electrical stimulation levels, hearing and spoken language abilities. RESULTS: In all, 15 cochlear implantations were performed. In three cases the electrode was found to be in the internal auditory canal on intraoperative x-ray and repositioned successfully. One child had a postoperative rhinorrhea confirmed to be cerebrospinal fluid but this resolved on conservative treatment. No severe complications occurred. Postoperative electrical stimulation levels were higher in 9 of 10 children, as compared with typically reported average levels in patients with a normal cochlea. Eight patients developed spoken language to various degrees while two were still at precommunication level. However, speech recognition scores were lower than average pediatric cases. CONCLUSION: Cochlear implantation is a safe procedure for children with severe-profound mixed hearing loss related to POU3F4 mutation inner ear malformation. The children develop hearing and spoken language but outcome is below average for pediatric CI recipients.

Parents' Stress and Coping Related to Children's Use of a Cochlear Implant: A Qualitative Study.

The aim was to increase understanding of parents' experiences of having a child with a cochlear implant (CI) and to explore how these related to children's use of CI. Twelve parents of children, full-time users or limited users of CIs, participated in the study. Qualitative content analysis showed that the parents of children who used their CI differed from the parents with limited users in how they handled stressors. Support from health care professionals was seen as insufficient. Parents need to get involved in dynamic processes in which health care resources promote parental coping.

Sense of coherence, social networks, and mental health among children with a cochlear implant.

OBJECTIVE: The aim of this study was to explore the personal and social resources of children with a cochlear implant from a child's perspective. METHOD: This descriptive cross-sectional study included 19 children with cochlear implants, aged 9-12 years. Data was collected, using the children's sense of coherence (CSOC) scale, the Network map, and the strengths and difficulties questionnaire (SDQ). The data was analyzed using descriptive and correlation statistics. RESULTS: Most children had a strong sense of coherence. School life was an important arena for their social network. The mental health was comparable to normal hearing children. Still, some of the children with implants had low SOC and poor mental health. High SOC and closeness of the social network, especially in school, were associated with good mental health. CONCLUSION: This study shows that Swedish school-aged children with cochlear implants as a group have access to personal and social resources as strong sense of coherence and social networks. Still, there are individual children with psychosocial problems who need support and treatment.

Strengths and difficulties in children with cochlear implants--comparing self-reports with reports from parents and teachers.

OBJECTIVE: The aim was to explore and compare how children with cochlear implants, their parents, and their teachers perceive the children's mental health in terms of emotional and behavioral strengths and difficulties. METHODS: The self-report, parents', and teachers' versions of the Strengths and Difficulties Questionnaire (SDQ) were used to assess the mental health of 22 children with cochlear implants. The children's assessments were then compared to the parents' and 17 teachers' assessments. The data were analyzed using the SPSS software package. RESULTS: Total difficulties (p=.000), emotional symptoms (p=.000), and conduct problems (p=.007) were greater according to the children than according to parents and teachers. Younger children (9 years, n=12) reported more emotional symptoms than older children (12 and 15 years, n=10). Almost a quarter of the children rated themselves in a way indicating mental ill-health. Parents and teachers each indicated mental ill-health for one child. CONCLUSIONS: Children with cochlear implants express greater concerns about their mental health than their parents and teachers do. This is important knowledge for adults in families, schools, and health care in order to support these children and offer treatment when needed.

Children with hearing impairment--living with cochlear implants or hearing aids.

OBJECTIVE: The aim of this study was to enhance knowledge about the life circumstances of children with cochlear implants or hearing aids, regarding daily functioning and attitude to the impairment. METHODS: Data were obtained from 36 children with cochlear implants and 38 children with hearing aids via study-specific questionnaires with fixed answer alternatives. The questions covered (1) usage of aids and related factors, (2) hearing in different everyday situations, (3) thoughts about the children's own hearing and others' attitudes to it, and (4) choice of language. The data were analyzed using SPSS, and presented via the theoretical frame of the International Classification of Functioning, Disability and Health, Child and Youth version (ICF-CY). RESULTS: Children with CI and HA functioned equally well in daily life, but there were also certain differences. Symptoms from neck and shoulders were more common among children with hearing aids than among children with cochlear implants (p<.001). Children with hearing aids used their aids significantly less often than those with cochlear implants (p<.001). The participation variables showed that children with hearing aids had significantly more hearing problems in team sports (p=.033) and outdoor activities (p=.019), in comparison to children with cochlear implants. The two groups had similar thoughts regarding their own hearing, mostly considering it not to be a problem. They also did not generally think that other people found their hearing to be a problem. CONCLUSIONS: Children with cochlear implants and children with hearing aids have, in some aspects, equally good functioning in everyday life situations. However, certain differences were found in dimensions of functioning, regarding neck and shoulder pain, usage of aids and sign language, and hearing problems in some activities.