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.

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.

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.

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.

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.

Physical Injury and Somatic Complaints: The Mediating Role of Posttraumatic Stress Symptoms in Young Survivors of a Terror Attack.

Physically injured trauma survivors have particularly high risk for later somatic complaints and posttraumatic stress symptoms (PTSS). However, the potential mediating role of PTSS linking injury to later somatic complaints has been poorly investigated. In this study, survivors (N = 255) were interviewed longitudinally at 2 timepoints after the terror attack on Utøya Island, Norway, in 2011. Assessments included injury sustained during the attack, PTSS (after 4-5 months), somatic complaints (after 14-15 months), and background factors. Causal mediation analysis was conducted to evaluate the potential mediating role of PTSS in linking injury to somatic complaints comparing 2 groups of injured survivors with noninjured survivors. For the nonhospitalized injured versus the noninjured survivors, the mediated pathway was significant (average causal mediation effect; ACME = 0.09, p = .028, proportion = 55.8%). For the hospitalized versus the noninjured survivors, the mediated pathway was not significant (ACME = 0.04, p = .453, proportion = 11.6%). PTSS may play a significant mediating role in the development of somatic complaints among nonhospitalized injured trauma survivors. Intervening health professionals should be aware of this possible pathway to somatic complaints.

Resilience factors play an important role in the mental health of parents when children survive acute lymphoblastic leukaemia.

AIM: Childhood cancer is a tremendous stressor that requires parents to adapt to new challenges, and research has mainly focused on psychopathology and rarely on a resource-oriented perspective, such as resilience. This study assessed resilience factors among parents of children surviving acute lymphoblastic leukaemia and parents of healthy children. We also explored the association between parental resilience and mental health. METHODS: The study compared 57 parents of 40 children from eight to 15 years of age in remission from acute lymphoblastic leukaemia and 63 parents of 42 healthy children. The Resilience Scale for Adults and the General Health Questionnaire were used to assess parental resilience and mental health. RESULTS: Parents of children surviving acute lymphoblastic leukaemia showed significantly lower levels of resilience than parents of healthy children, but no significant difference was found for mental health. Certain resilience factors were positively associated with mental health, especially for mothers, such as family cohesion, good perception of self and being able to plan their future. CONCLUSION: Resilience factors may help to protect parents' mental health, especially mothers, when their child has survived acute lymphoblastic leukaemia and should be considered in a clinical setting. Further research on resilience factors for fathers is needed.

[Adolescents with cerebral palsy and their contact with the GP and the habilitative services]. / Ungdom med cerebral parese og deres kontakt med fastlege og habiliteringstjeneste.

BACKGROUND: Cerebral palsy (CP) often entails a need for health and social services throughout life. Upon scrutiny, it has been found that the transition from services for children and adolescents to services for adults is particularly challenging. The study investigates contact between adolescents with CP and their GPs/habilitative services up to and after the age of 18 years, and the percentage who have an individual habilitation plan (IHP). MATERIAL AND METHOD: An attempt was made to identify all those with CP born in 1992 and 1993 and resident in southeast Norway. Seventy-four patients were included (time point I, interview and clinical examination). Forty-two (57%) responded at the follow-up examination (time point II, questionnaire). RESULTS: At time point I, 35 (47%) of the adolescents had consulted their GP in the past year, 49 (66%) had been in contact with the habilitative services, and 42 (57%) had an IHP. Twenty-eight (38%) used mobility aids. Use of mobility aids gave lower odds of consultation with the GP. Longer distances from home to the habilitative services gave lower odds of contact with both the GP and the habilitative services. Five adolescents with mobility aids did not have an IHP. At time point II, the percentage who had consulted their GP had increased somewhat, the percentage who had been in contact with the habilitative services had reduced, and the percentage who had an IHP was unchanged. INTERPRETATION: The findings reinforce the assumption that the health services provided to disabled adolescents are less locally based and less well coordinated than is supposed, and that there may be geographical differences in the service offered.

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.

Post-traumatic stress reactions in survivors of the 2011 massacre on Utøya Island, Norway.

BACKGROUND: Although youths in many countries have been exposed to terrorism, few studies have examined early risk and protective factors for the subsequent development of mental health problems. AIMS: To investigate the levels of post-traumatic stress in survivors of the 2011 massacre on Utøya Island compared with the general population in Norway, and to identify predictive factors. METHOD: Four hundred and ninety survivors were invited to participate. Structured face-to-face interviews were performed 4-5 months after the attack. RESULTS: There were 325 study participants (response rate 66%). Survivors had been highly exposed to danger and loss. Post-traumatic stress levels were more than six times higher in survivors than in the general population. Predictors were female gender, minority ethnic status, high level of trauma exposure, pain, the loss of someone close and social support. CONCLUSIONS: Survivor characteristics that can be assessed in the early aftermath of a terrorist attack strongly predict the subsequent mental health problems of exposed youths. The highly elevated symptoms observed were largely attributable to the traumatic experience and reflect the mental health costs of the terrorist attack.

Mental health in women experiencing preterm birth.

BACKGROUND: The aim of the study was to explore the degree of psychological distress, anxiety, and trauma related stress reactions in mothers who experience preterm birth. Secondarily, we wanted to identify possible predictors of maternal mental health problems. METHODS: Twenty-nine mothers of 35 premature children born before 33rd week of pregnancy were assessed within two weeks after given birth. The standardized psychometric methods; Impact of Event Scale (IES), General Health Questionnaire (GHQ) and State Anxiety Inventory (STAI) assessed mental health problems. The predictors for maternal distress, anxiety, and trauma related stress reactions were pregnancy variables, preterm delivery, Gestation Age, maternal trait anxiety and parity. In addition, maternal prevalence of mental health problems was assessed by clinical diagnoses. RESULTS: Our study revealed a high prevalence (52%) of posttraumatic stress responses in the mothers. CONCLUSIONS: Our results suggest an early examination of mothers' psychological reactions to preterm birth at the maternity ward. An early intervention should be considered while the child still is in the neonatal intensive care unit.

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.

Long-term risk of mental health problems in women experiencing preterm birth: a longitudinal study of 29 mothers.

BACKGROUND: Several studies have reported significantly higher stress levels, both short and long terms, among mothers giving preterm birth compared with mothers giving birth at term. Stress, however, is a psychological phenomenon that may present as anxiety, depression and/or trauma reactions. In this study, the long-term mental health outcomes and the prevalence of anxiety, depression and trauma reactions in women experiencing preterm birth were explored. Interactional, main effect variables and predictors were identified. METHODS: Twenty-nine mothers of 35 premature children born before the 33rd week of pregnancy were assessed within 2 weeks postpartum (T0), 2 weeks after hospitalization (T1), 6 months post-term (T2), and 18 months post-term (T3). The standardized psychometric methods Impact of Event Scale (IES), General Health Questionnaire (GHQ) and State Anxiety Inventory (STAI-X1) assessed the maternal mental health outcomes. RESULTS: The maternal mental health problems except state anxiety decreased from T0 to T1, but remained high and stable at T3. The prevalence of posttraumatic stress reactions (PTSR) and posttraumatic stress disorder (PTSD) at T0 and T3 was 52% and 23%, respectively. We identified the time period between T0 and T1 to have a significant main effect on mental health outcomes. The predictors of higher levels of mental health problems were preeclampsia, previous psychological treatment, age, trait anxiety and infant's postnatal intraventricular haemorrhage. Bleeding in pregnancy predicted lower levels of mental health problems. CONCLUSIONS: The prevalence of maternal mental health problems remained high, emphasizing the importance of effective interventions.

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.

Parent-reported participation in children with cerebral palsy: the contribution of recurrent musculoskeletal pain and child mental health problems.

AIM: The aim of the study was to explore the contribution of recurrent musculoskeletal pain and mental health to aspects of participation in children with cerebral palsy (CP). METHOD: A total of 105 participants (54 males, 51 females); mean age 14 y (SD 3) were assessed by clinical examination, interview, and parental questionnaires. CP type distribution was as follows: spastic unilateral, 37%; spastic bilateral, 56%; and dyskinetic, 7%. Motor function assessed using the Gross Motor Function Classification System was level I, 33%; level II, 40%; level III, 15%; and level IV/V, 11%. Parents reported child participation using the Assessment of Life Habits, child mental health problems using the Strengths and Difficulties Questionnaire, their own mental health using the General Health Questionnaire, and their socioeconomic status. RESULTS: Recurrent musculoskeletal pain was associated with reduced accomplishment of daily activities (B=-1.22, p=0.02) and social roles (B=-1.17, p=0.03), and with reduced parental satisfaction with the accomplishment of daily activities (B=-1.14, p=0.03) and social roles (B=-1.48, p<0.01). Increasing levels of child mental health problems was associated with reduced accomplishment of daily activities (B=-0.10, p=0.02) and social roles (B=-0.11, p<0.01), and with reduced parental satisfaction with the accomplishment of social roles (B=-0.21, p<0.01). INTERPRETATION: Pain and child mental health should be considered in most participation models in CP. Regarding participation as an objective outcome measure is questionable.

Kidney transplantation in childhood: mental health and quality of life of children and caregivers.

Our objective was to assess the mental health and health-related quality of life (HRQOL) in children and their parents after renal transplantation (TX) compared to healthy controls and children with acute lymphoblastic leukemia (ALL) and to identify possible health status variables associated with impaired mental health and HRQOL. Thirty-eight TX children with a median age of 13 (range 3-19) years were investigated. Mental health was assessed by the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the Strength and Difficulties Questionnaire (SDQ-20). Each mother's own mental health and QOL were assessed by the General Health Questionnaire (GHQ-30) and the Quality of Life Scale (QOLS). Forty children with ALL [median age 11 (8.5-15.4) years] and 42 healthy children [median age 11 (8.9- 15) years] served as controls. Treadmill exercise results from 22 of the 38 patients were included in the analysis. TX children showed significantly higher levels of mental health problems and lower HRQOL at 2 to 16 years after transplantation compared to both control groups. Body mass index and maximal oxygen uptake (n = 22/38) were significant predictors of child mental health (SDQ) and child QOL (PedsQL), respectively. Based on these results, we suggest that rehabilitation after TX should include a focus on physical activity and QOL to reduce interconnected physical and psychological morbidity in kidney TX children.