Mental Health, Psychosocial Functioning, and Quality of Life in Adolescents With Hirschsprung Disease.

BACKGROUND: Studies of mental health in adolescents with Hirschsprung disease (HD) are scarce. This cross-sectional study investigates mental health, psychosocial functioning and quality of life in HD adolescents. METHODS: Adolescents (12-18 years) treated at the Department of pediatric surgery at Oslo University Hospital were invited for participation. Mental health was assessed by interview; Child Assessment Schedule (CAS) and questionnaires; parental Child Behavior Checklist (CBCL) and adolescent Youth Self-Report (YSR). Psychosocial functioning was rated by Child Global Assessment Scale (cGAS). Adolescent Quality of Life was assessed by Pediatric Quality of Life inventory (PedsQL) and chronic family difficulties (CFD) by interview. Medical records were reviewed for somatic history. RESULTS: Thirty-seven adolescents, 28 males, median age 14.3 years, participated. By CAS interview, 8 of 37 (44% of females and 14% of males) fulfilled criteria for psychiatric diagnosis all within emotional and related disorders. Twenty-seven percent had CBCL internalizing scores and 16% had YSR internalizing scores in clinical range indicating emotional problems. By interviewer rated cGAS, 27% were scored in clinical range. By PedsQL 16% reported reduced psychosocial health score. Increased CFD, lower psychosocial functioning and reduced QoL as well as less paternal education were significantly associated with psychiatric diagnosis. Twice as many (4/8) adolescents who either had a stoma or bowel management had a psychiatric diagnosis compared to those who had neither stoma nor bowel management (7/28). CONCLUSION: Nearly one in four adolescents with HD fulfilled criteria for psychiatric diagnosis. Mental health problems were associated with reduced psychosocial function and reduced QoL. LEVEL OF EVIDENCE: III.

Autistic Characteristics in a Nationally Representative Clinical Sample of Adolescents Seeking Medical Gender-Affirming Treatment in Norway.

PURPOSE: Several studies have reported on the intersection of autism and gender incongruence (GI) in clinical populations. This study aims to investigate autistic characteristics and registered autism spectrum diagnoses (ASD) in a clinical cohort of 83 adolescents referred to the National Gender Team for Children and Adolescents in Norway during 2020. METHODS: Parents completed the Social Responsiveness Scale (SRS). Background information and registered psychiatric diagnoses were extracted from patient files. RESULTS: The results showed that 25% of the participants scored within the clinical range on the SRS: 27.4% of adolescents who were assigned female at birth (AFAB) and 19.0% of adolescents who were assigned male at birth (AMAB). AFAB had significantly higher scores on SRS Total Scale and the Social Motivation and Autistic Mannerisms subscales compared to the female norm group. AMAB had higher scores on the Social Motivation subscale and lower scores on the Social Awareness subscale, compared to the male norm population. Information from patient files revealed that 67.5% had one or more registered psychiatric diagnosis. 9.6% had received an ASD diagnosis, all AFAB. 18.1% had received an attention deficit hyperactivity disorder (ADHD) diagnosis. The most common psychiatric diagnoses were depression (25.3%) and anxiety disorders (18.1%). Further, 44.6% had a history of self-harm, and 15.7% had a history of a suicide attempt. CONCLUSION: The results showed an overrepresentation of ASD diagnoses and autistic characteristics measured by SRS for AFAB. There was an overrepresentation of psychiatric diagnoses for both the AFAB and the AMAB group in this study sample. Implications for treatment and future research are discussed.

Health-related quality of life in adolescents with cerebral palsy; a cross-sectional and longitudinal population-based study.

AIMS: The aims of this population-based cross-sectional and longitudinal study were to investigate different aspects of health-related quality of life (HRQoL) in adolescents with cerebral palsy (CP), to define possible changes in HRQoL from childhood to adolescence and to identify factors associated with low HRQoL in adolescence. METHODS: Proxy-reports of 64 adolescents, aged 12-17 years, with bilateral CP in GMFCS levels III-V participating in a surveillance programme, included five of the six domains from the HRQoL instrument Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD): (1) Activities of Daily Living and Personal Care, (2) Positioning, Transfer and Mobility, (3) Comfort and Emotions, (5) General Health and (6) Overall Quality of Life, and the two questions on pain from the Child Health Questionnaire (CHQ). Fifty-eight participants comprised the longitudinal sample. RESULTS: From childhood to adolescence, the mean CPCHILD domain scores decreased slightly in General Health and remained unchanged in the other four domains. In the domain General Health, the number of medications increased, which was the reason for the score decrease. Pain severity increased significantly. Severe motor impairment was associated with low scores in domains 1, 2, 3 and 5, and more severe pain with low scores in domains 2, 3, 5 and 6. A low domain score in childhood was associated with a low score in each corresponding domain in adolescence. INTERPRETATION: An assessment of HRQoL should be included in CP surveillance programmes because this could identify needs for interventions in individuals with severe CP. This study indicates the importance of improved pain management in both children and adolescents with severe CP.

The biopsychosocial model in paediatric clinical practice-An interdisciplinary approach to somatic symptom disorders.

AIM: The paper aims to show how the biopsychosocial (BPS) model can be applied as a clinical method and guide the assessment and treatment of children and adolescents with somatic symptom disorders (SSD). METHODS: Based on relevant literature and our clinical work with children and adolescents with SSD, we have developed a method to ensure a structured, interdisciplinary examination of biological, psychological and social factors, operationalising the BPS model into a clinical method. RESULTS: The BPS model renders assessment and treatment of complex conditions as a basis for evaluating phenomena not confined by diagnostic tools, but still includes all information from these tools. It requires an interdisciplinary approach, giving individual patient and caregivers a central position. A thorough medical examination is required as a starting point for assessments. Good results rest upon a shared understanding between patient, caregivers and professionals. CONCLUSIONS: 'Biopsychosocial' is often claimed as a basis for clinical work with complex cases, medical, functional and psychiatric, but scarcely with a corresponding BPS method or practice. The BPS method should guide further development of holistic, interdisciplinary health care on all levels, to assess and help children and adolescents with SSD.

Quality of life and emotional vulnerability in a national cohort of adolescents living with Fontan circulation.

INTRODUCTION: To investigate quality of life and mental health after Fontan completion, we aimed to characterise outcomes in a representative group of adolescent patients. The study was part of the pre-transition clinical work-up in adolescents with Fontan-type palliation of univentricular CHD. The programme covers the entire paediatric Fontan patient population in Norway. METHODS: Our cross-sectional study included 42 adolescents with Fontan circulation aged 15-18. We recruited a control group of 29 healthy peers. Quality of life was measured by the Pediatric Quality of Life Inventory Questionnaire, while mental health was assessed with the Strength and Difficulties Questionnaire. RESULTS: Fontan patients scored lower than healthy controls on the Pediatric Quality of Life Inventory total (p = 0.004), the physical (p < 0.001) and social (p = 0.001) functioning subscale, and the Strength and Difficulties Questionnaire subscale of emotional symptoms (p = 0.035). Compared to two of the healthy teens (7%), seven patients (16%) in the Fontan group scored as having impaired mental health (p = 0.224). The female/male ratio for individuals with impaired health was 7:2 (p = 0.003). CONCLUSIONS: Compared to healthy controls, adolescents after Fontan-type palliation in Norway have good health-related quality of life and mental health, despite having slightly lower score than healthy individuals, mainly in physical domains and school functioning. Compared to healthy controls and healthy teenagers, these adolescents have somewhat more emotional problems, and compared to male patients, female patients more often have impaired mental health.

Epidemiology of traumatic brain injury in children 15 years and younger in South-Eastern Norway in 2015-16. Implications for prevention and follow-up needs.

OBJECTIVE: This retrospective study aimed to describe the volume, severity, and injury mechanism of all hospital-admitted pediatric traumatic brain injury (pTBI) at Oslo University Hospital (OUH), emphasizing consequences for prevention and factors indicating a need for follow-up programs. METHOD: Data were extracted from the OUH Trauma registry on 176 children, 0-15 years old, admitted to OUH in 2015 and 2016 with a pTBI diagnosis. The dataset contains demographic data, injury mechanism, type, and severity (Glasgow coma scale, GCS; abbreviated injury scale, AIS; injury severity score, ISS), ICD-10 diagnosis codes, level of treatment, and destination of discharge. RESULTS: 79.5% had mild, 9% moderate, and 11.4% severe TBI. The incidence of hospital-treated pTBI in Oslo was 29 per 100,000 per year. The boy: girl ratio was 1.9:1, but in the young teenage group (14-15 years), the ratio was 1:1. Intracranial injury (ICI) identified on CT/MRI was associated with extended hospital stays, with a median of 6 days compared to 1 day for patients without ICI. 27% of the patients assessed as mild TBI at admission had ICI. Children below eight years of age had a higher incidence of moderate and severe ICI from trauma (53% v.s. 28% in children ≥ eight years). CONCLUSION: The injury characteristics of hospital-treated pTBI are in line with other European countries, but we find the boy-girl ratio different as young teenage girls seem to be catching up with the boys. ICI and length of stay should be considered when deciding which patients need follow-up and rehabilitation.

Primary antibody deficiency: The impact on the quality of life and mental health of affected children and their parents.

AIM: To evaluate health-related quality of life, mental health and treatment-related stress responses in children with primary antibody deficiency and both their parents. METHODS: Children and their parents completed the standardised questionnaires Pediatric Quality of life Inventory, Strength and Difficulties Questionnaire and Impact of Event Scale. Parents also completed standardised questionnaires regarding their own mental health and quality of life. The results were compared to those of healthy children, kidney transplanted children and children in remission from acute lymphoblastic leukaemia. RESULTS: Children with primary antibody deficiency reported a poorer health-related quality of life compared to healthy children and children in remission from acute lymphoblastic leukaemia. They reported poorer mental health compared with healthy children. Mothers of children with primary antibody deficiency reported poorer mental health compared to mothers of healthy children but comparable to mothers of chronically ill children. Parents reported a similar quality of life as the general Norwegian population. Treatment with subcutaneous immunoglobulin infusions at home is generally well tolerated, but some report severe treatment-related stress. CONCLUSION: Primary antibody deficiency has a significant impact on quality of life and mental health of affected children. Patients and parents with severe treatment-related stress should be identified and helped.

The Outdoor Care Retreat. / Friluftssykehuset.

Spending time in nature can have a regulatory effect on the body. The architectural design and location of the Outdoor Care Retreat at Oslo University Hospital create a unique therapeutic space.

Piloting the Use of a Short Observation List for ASD-Symptoms in Day-Care: Challenges and Further Possibilities.

Early symptoms of autism spectrum disorder (ASD) develop through the second year of life, making a stable ASD diagnosis possible around 24 months of age. However, in general, children with ASD are diagnosed later. In this study we explored the use of a short observation list to detect symptoms associated with ASD in children 12-24 months of age attending typical day-care centers. The results indicate that a short observation list used by day-care teachers does not reveal sufficient properties to be independently used in young children in day-care centers. Further studies should explore multiple and repeated measures for early detection of symptoms associated with ASD in typical day-care centers.

Neurocognitive Outcome and Compensating Possibilities in Children and Adolescents Treated for Acute Lymphoblastic Leukemia With Chemotherapy Only.

Aim: To examine the neurocognitive outcomes in children and adolescents with acute lymphoblastic leukemia (ALL) in remission who were treated with systemic chemotherapy only (CTO). Methods: Neurocognitive performances in 36 children and adolescents, aged 8.4-15.3 years, in long-term remission from ALL 4.3-12.4 years post diagnosis, without relapse, and with no pre-diagnosis history of neurodevelopmental disorder were compared with 36 healthy controls matched for gender, age, and parents' socio-economic status. The former patients and the healthy controls completed an extensive battery of standardized neuropsychological tests. Results: Survivors who were treated by CTO obtained significantly lower scores than did healthy controls on the domains of Copy and drawing (p = 0.001; Cohen's d 0.85; after controlling for Type 1 errors q = 0.006), Arithmetic (p = 0.001; Cohen's d 0.80; after controlling for Type 1 errors, q = 0.006), and Tactile sensory functions (p = 0.008; Cohen's d 0.65; after controlling for Type 1 errors, q = 0.03). Fifty percent of the ALL group were more than 1 SD below the control groups mean on Copy and drawing. There was an interaction between age and group (ALL vs. Control, p = 0.042) on Copy and drawing, indicating that the youngest ALL patients exhibited the worst performance. The oldest ALL patients performed equal to or better than the controls. A tendency in the same direction was seen for Arithmetic and Tactile sensory functions. The ALL survivors exhibited a steeper rising learning slope on repeated tests, with lower scores on a tactile problem-solving task, tactile sensory tests, verbal memory, and visual attention, but they performed as well as the controls when stimuli were repeated. Conclusion: The results indicate that neurocognitive long-term sequelae in ALL survivors are limited to specific domains - particularly complex drawing, arithmetic, and tactile processing, and novelty processing. Cognitive deficits are shown among the youngest ALL patients. Intervention programs and school programs should account for difficulties with processing new information and taking advantage of repetitions as a strength, which may prevent survivors from falling behind their peers.

Examining the organization and quality of the psychiatric consultative service in Norway.

AIM: Patients admitted to somatic departments may face psychiatric challenges, such as suicidal behavior, substance abuse, crisis reactions, or somatoform disorders. Mental disorders can complicate the diagnosis and treatment of a somatic disorder. The Consultation-Liaison Psychiatry Service (CLP) can provide advice and guidance to attending staff in somatic departments. CLP in Norwegian hospitals was last reviewed in 1997. There is insufficient awareness of the service as it currently stands. This specialist field is expanding, and there is a need to examine how the service is organized at present and how it works. MATERIALS AND METHODS: A study of the scope, quality, availability, content, and organization of the psychiatric consultative service was conducted in February-March 2016. The study also examined whether service users and providers were satisfied with the service, the content of the service, and whether they considered the service to be adequate. RESULTS AND CONCLUSIONS: Although CLP has expanded over the last three years, somatic and psychiatric departments wish for its further expansion. The service provision is at an acceptable level during the daytime, but not during weekends and holidays. We found that 20% of all referrals are rejected and that 80-90% of all physicians wanted outpatient services for short-term follow-up and for help with undiagnosed, unclear, unexplained, (indeterminate) conditions. DISCUSSION: The service works satisfactorily during ordinary working hours. There is a need to establish outpatient services and to strengthen the services outside these hours. Collaborative research should be further developed.

Children's views on postsurgical pain in recovery units in Norway: A qualitative study.

AIMS AND OBJECTIVES: To explore children's postsurgical experiences with pain and pain management in the recovery unit. BACKGROUND: Children's pain is underestimated and undertreated. Untreated pain can cause unnecessary suffering, increased complication risks and may lead to chronic pain. Research exploring children's experiences with postoperative pain and pain management is limited. DESIGN: A qualitative, exploratory study. The study complied with the Consolidated Criteria for Reporting Qualitative Research (COREQ). METHODS: Children (N = 20), 8-16 years old, took part in semi-structured interviews about their experiences with pain and postoperative pain management while they were in a recovery unit. Data were collected at two university hospitals in Norway. Content analysis was used to analyse the data. RESULTS: Three themes emerged from the interviews: "children's experiences of what felt unpleasant and painful," "children's experiences with pain management" and "children's recommendations for future pain management". About half of the children reported moderate to severe pain while in the recovery unit and they did not always tell their nurses when they had pain. They also reported experiencing pain in places other than their surgical wounds and stated that nausea and vomiting felt unpleasant and painful. The children indicated that pain medications and the use of nonpharmacological methods helped them cope with their pain and provided several recommendations about how to improve pain management. CONCLUSION: Paediatric postoperative pain management remains suboptimal. The children in our study provided useful information about their pain experiences, how to improve pain management and explained why they did not tell their nurses when they were in pain. RELEVANCE TO CLINICAL PRACTICE: These findings should direct further improvements in paediatric postoperative pain management, such as increased use of pain assessment tools and preparatory information, as well as more appropriate administration of pain medications.

Individual characteristics of students with autism spectrum disorders and school refusal behavior.

This study compared social, executive, emotional, and behavioral characteristics of students with autism spectrum disorder who did and did not display school refusal behavior. The participants were 62 students with autism spectrum disorder without intellectual disability aged 9-16 years attending inclusive schools. Parents first completed questionnaires assessing social and executive functioning as well as emotional and behavioral problems. They then documented their child's school refusal behavior for a period of 20 days. Compared to students without school refusal behavior (n = 29), students with school refusal behavior (n = 33) were significantly less socially motivated; displayed more deficits in initiating tasks or activities, in generating ideas, responses, or problem-solving strategies; and displayed more withdrawn and depressive symptoms. Assessing social and executive functioning, as well as emotional problems, may help professionals provide tailored interventions for students with autism spectrum disorder and school refusal behavior, which will further be valuable in recognizing characteristics associated with school refusal behavior.

Psychosocial care for hospitalized young survivors after the terror attack on Utøya Island: A qualitative study of the survivors' experiences.

OBJECTIVE: The objective of the study was to explore hospitalized youths' experiences with psychosocial care in the hospital after the shooting on Utøya Island, Norway, in 2011. METHODS: 17 hospitalized youths were interviewed face-to-face 30-31 months after the attack. The interviews were analysed using interpretative phenomenological analysis (IPA). The initial reading and coding of the interviews was carried out inductively. To explore the emphasis placed on everyday conversation and ordinary interaction detected during the initial reading, the text was re-read while bearing in mind concepts from the research field of sociology concerning the therapeutic potential in commonplace conversations and situations. RESULTS: The youths highlighted the need for health care workers to embrace essential aspects of their past, present and future. Therefore, three overarching categories emerged related to 1) Remembering the past, 2) Dealing with the present and 3) Preparing for the future. For each temporal category, two related subcategories were identified: Past:Engaging in the trauma narrative; Understanding the trauma reminders; Present: Bringing back normalcy; Being there; Future: Supporting confidence; Instilling trust. CONCLUSIONS: For the youths in the current study, talking with the hospital staff about their traumatic experiences was mostly perceived as positive and linked to various helpful outcomes. In addition to engaging in the trauma narrative, the staff needed to comprehend and address how the traumatic experiences and the hospitalization resulted in the survivors' extended fear and changed appraisals about the world and themselves. Having the time to stay physically and mentally close to the youths and engage in everyday interaction was crucial in rebuilding their sense of safety and bringing back normalcy. The hospital staff played a significant role in strengthening the survivors' confidence in own capabilities and trust in others. The different professionals in the hospital contributed to various aspects of psychosocial care, and both trauma-focused interventions and commonplace conversations and actions were emphasized as important and meaningful approaches.

Small effort, high impact: Focus on physical activity improves oxygen uptake (VO2peak ), quality of life, and mental health after pediatric renal transplantation.

This study estimates the effects on peak oxygen uptake (VO2 peak ), QoL, and mental health after the introduction of an adjusted post-transplant follow-up program, that is, early physiotherapy and focus on the importance of physical activity. VO2 peak was measured by a treadmill exercise test in 20 renal-transplanted children on the adjusted post-transplant follow-up and compared with a group of 22 patients investigated in a previously, before the implementation of our new follow-up routines. PedsQL and The Strengths and Difficulties Questionnaire (SDQ) were used to assess QoL and mental health in 45 patients on the new as compared to 32 patients on the previous follow-up strategy. The patients exposed to early physiotherapy and a higher focus on physical activity had significantly higher VO2 peak (44.3 vs 33.5 mL kg-1  min-1 , P = .031) in addition to improved QoL (P = .003) and mental health scores (P = .012). The cardiovascular risk profile was similar in both groups aside from significantly higher triglycerides in the present cohort. Small efforts as early physiotherapy and increased focus on physical activity after pediatric renal transplantation have significant impact on cardiorespiratory fitness, QoL, and mental health. The importance of physical activity should therefore be emphasized in follow-up programs.

Identification of Symptoms of Autism Spectrum Disorders in the Second Year of Life at Day-Care Centres by Day-Care Staff: Step One in the Development of a Short Observation List.

Early symptoms of ASD develop through the second year of life, making a stable ASD diagnosis possible at 24 months of age. However, in general, children with ASD have their diagnosis at an older age. This retrospective study, including 30 children with ASD and 30 control children aged 3-6 years, explored the possibility of developing a short observation list to be used in day care settings for children 12-24 months of age. From 73 symptoms selected from published screeners and observation tools, we were able to construct a list of six symptoms that retrospectively differentiated children with ASD from typically developing children at 12-24 months of age when recalled by day-care personnel.

Brief Report: Agreement Between Parents and Day-Care Professionals on Early Symptoms Associated with Autism Spectrum Disorders.

Early identification of Autism Spectrum Disorders (ASD) has the potential to elicit effective early intervention, improving children's level of functioning and developmental trajectories as well as reducing parental stress. Multiple sources of information, including several informants may facilitate early identification. This study examined the agreement between parents and day-care professionals on how they retrospectively recall early symptoms associated with ASD. In this study, we found fair to excellent agreement on early symptoms between parents and day-care professionals. The finding indicates that day-care centres may be a supplementary area for early identification of ASD. More research is needed to explore day-care centers possible role in this early identification.

Long-term psychosocial consequences of surgical congenital malformations.

Surgical congenital malformations often represent years of treatment, large number of hospital stays, treatment procedures, and long-term functional sequels affecting patients' psychosocial functioning. Both functional defects and psychosocial difficulties that occur commonly in childhood may pass through adolescence on to adulthood. This overview presents reports published over the past 3 decades to elucidate the long-term psychosocial consequences of surgical congenital malformations. Literature searches conducted on PubMed database revealed that less than 1% of all the records of surgical congenital malformations described long-term psychosocial consequences, but with diverse findings. This inconsistency may be due to methodological differences or deficiencies; especially in study design, patient sampling, and methods. Most of the studies revealed that the functional deficits may have great impact on patients' mental health, psychosocial functioning, and QoL; both short- and long-term negative consequences. Factors other than functional problems, e.g., repeated anesthesia, multiple hospitalization, traumatic treatment procedures, and parental dysfunctioning, may also predict long-term mental health and psychosocial functioning. Through multidisciplinary approach, pediatric surgeons should also be aware of deficits in emotional and psychosocial functioning. To achieve overall optimal psychosocial functioning, the challenge is to find a compromise between physically optimal treatment procedures and procedures that are not psychologically detrimental.