Long-term follow-up of prenatally dexamethasone-treated children at risk for congenital adrenal hyperplasia

Congenital adrenal hyperplasia (CAH) is a disorder of steroid genesis affecting approximately 1:10 000 children and leading to increased levels of androgens during foetal life and subsequent virilization of external genitalia in affected girls. However, prenatal virilization can be eliminated by antenatal dexamethasone (DEX) treatment. To be fully effective, DEX treatment has to be started in the 6–7th postmenstrual week and continued until the results of the prenatal diagnosis are available at gestational week 11– 12. This means that 7 out of 8 foetuses (boys and unaffected girls) are treated unnecessarily during early gestation. CAH-affected girls are treated to term. We performed a long-term follow-up of children treated in Sweden during the years 1985–1995, and 26 of the 40 treated individuals participated in the study. The control group consisted of 35 sex- and age-matched healthy children. In general, the DEX-treated children were as well adjusted as the controls (Studies I and II). There were no between-group differences in major cognitive measures such as IQ, learning and memory. Parents reported that the DEX-treated children performed just as well at school as the controls. However, in a test of verbal working memory (WM), significantly lower results were observed in CAH-unaffected short-term treated children. The CAH-affected children did not differ from the control group, probably owing to small sample size and, consequently, low power. The verbal WM was correlated with the children‟s self-perception of difficulties in scholastic ability, another measure in which CAH-unaffected children differed from the controls. In measures of temperament, psychopathology and well-being, parents reported generally as good health in the DEX- exposed group as in the control group. The only difference was an observed increase in sociability in DEX-exposed children. In the children‟s self-ratings, however, increased social anxiety was observed. This difference was significant in CAH-unaffected short- term-treated children. In order to study gender role behaviour (Studies III and IV), we developed a new instrument, the Karolinska Inventory of Gender Role Behaviour (KI-GRB), which was evaluated in an additional group of 180 school-age children. The underlying dimensions of the inventory were described by the factor structure and the KI-GRB subscales were also associated with sex-specific cognition. In prenatally DEX-exposed, CAH-unaffected boys, more neutral behaviours were observed, while in girls no group differences emerged after controlling for site of residence. A similar pattern was found when CAH-affected children were included in the analyses In summary, these studies indicate that prenatal DEX treatment of CAH may have negative effects on certain aspects of cognitive and affective development, as well as affect gender role behaviour

Impulsivity in Compulsive Sexual Behavior Disorder and Pedophilic Disorder

Background and aims: Impulsivity is regarded as a risk factor for sexual crime reoffending, and a suggested core feature in Compulsive Sexual Behavior Disorder. The aim of this study was to explore clinical (e.g. neurodevelopmental disorders), behavioral and neurocognitive dimensions of impulsivity in disorders of problematic sexuality, and the possible correlation between sexual compulsivity and impulsivity. Methods: Men with Compulsive Sexual Behavior Disorder (n = 20), and Pedophilic Disorder (n = 55), enrolled in two separate drug trials in a specialized Swedish sexual medicine outpatient clinic, as well as healthy male controls (n = 57) were assessed with the Hypersexual Behavior Inventory (HBI) for sexual compulsivity, and with the Barratt Impulsiveness Scale (BIS) and Connors' Continuous Performance Test-II (CPT-II) for impulsivity. Psychiatric comorbidity information was extracted from interviews and patient case files. Results: Approximately a quarter of the clinical groups had Attention-Deficit/Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder. Both clinical groups reported more compulsive sexuality (r = 0.73-0.75) and attentional impulsivity (r = 0.36-0.38) than controls (P < 0.05). Based on results on univariate correlation analysis, BIS attentional score, ADHD, and Commissions T-score from CPT-II were entered in a multiple linear regression model, which accounted for 15% of the variance in HBI score (P < 0.0001). BIS attentional score was the only independent positive predictor of HBI (P = 0.001). Discussion: Self-rated attentional impulsivity is an important associated factor of compulsive sexuality, even after controlling for ADHD. Psychiatric comorbidity and compulsive sexuality are common in Pedophilic Disorder. Conclusion: Neurodevelopmental disorders and attentional impulsivity - including suitable interventions - should be further investigated in both disorders

Attention Deficit Hyperactivity Disorder (ADHD) among longer-term prison inmates is a prevalent, persistent and disabling disorder

<p>Abstract</p> <p>Background</p> <p>ADHD is a common and disabling disorder, with an increased risk for coexisting disorders, substance abuse and delinquency. In the present study, we aimed at exploring ADHD and criminality. We estimated the prevalence of ADHD among longer-term prison inmates, described symptoms and cognitive functioning, and compared findings with ADHD among psychiatric outpatients and healthy controls.</p> <p>Methods</p> <p>At Norrtälje Prison, we approached 315 male inmates for screening of childhood ADHD by the Wender Utah Rating Scale (WURS-25) and for present ADHD by the Adult ADHD Self-Report Screener (ASRS-Screener). The response rate was 62%. Further, we assessed 34 inmates for ADHD and coexisting disorders. Finally, we compared findings with 20 adult males with ADHD, assessed at a psychiatric outpatient clinic and 18 healthy controls.</p> <p>Results</p> <p>The estimated prevalence of adult ADHD among longer-term inmates was 40%. Only 2 out of 30 prison inmates confirmed with ADHD had received a diagnosis of ADHD during childhood, despite most needed health services and educational support. All subjects reported lifetime substance use disorder (SUD) where amphetamine was the most common drug. Mood and anxiety disorders were present among half of subjects; autism spectrum disorder (ASD) among one fourth and psychopathy among one tenth. Personality disorders were common; almost all inmates presented conduct disorder (CD) before antisocial personality disorder (APD). Prison inmates reported more ADHD symptoms during both childhood and adulthood, compared with ADHD psychiatric outpatients. Further, analysis of executive functions after controlling for IQ showed both ADHD groups performed poorer than controls on working memory tests. Besides, on a continuous performance test, the ADHD prison group displayed poorer results compared with both other groups.</p> <p>Conclusions</p> <p>This study suggested ADHD to be present among 40% of adult male longer-term prison inmates. Further, ADHD and coexisting disorders, such as SUD, ASD, personality disorders, mood- and anxiety disorders, severely affected prison inmates with ADHD. Besides, inmates showed poorer executive functions also when controlling for estimated IQ compared with ADHD among psychiatric outpatients and controls. Our findings imply the need for considering these severities when designing treatment programmes for prison inmates with ADHD.</p

Psykologiska behandlingar för vuxna med ADHD

ADHD hos vuxna kännetecknas av funktionsnedsättningar inom många viktiga livområden. Både nydiagnosticerade vuxna med ADHD och deras närstående behöver information om ADHD och vilka behandlingar och stödinsatser som finns. Som första psykologisk intervention kan  psykoedukation i grupp med närstående vara ett genomförbart och effektivt alternativ som också ger ett forum för att bearbeta och acceptera det faktum att ADHD diagnos har konstaterats. Psykoedukation kan motivera till mer krävande psykologiska interventioner såsom dialektisk beteendeterapi –baserad färdighetsträning i grupp. Gemensamt för dessa interventioner är att de bygger på beteendeinriktade principer, har utvecklats och utvärderats inom ramen för kliniska verksamheter, utifrån behov hos personer med ADHD. Behandlingsmanualerna publiceras på svenska för att främja spridning av beprövade behandlingsmetoder för vuxna med ADHD

Culturally diverse families of young children with ASD in Sweden : Parental explanatory models

Background Research suggests that families’ knowledge and cultural perceptions of autism spectrum disorder (ASD), and beliefs about its etiology and prognosis, can affect parents’ recognition of the first signs of autism in their children and influence help seeking and treatment decisions. Objective This study investigated explanatory models of autism among parents of young children with ASD in the multicultural context of Sweden. Method Seventeen parents from diverse cultural, ethnic and linguistic backgrounds participated in semi-structured interviews. A deductive approach to qualitative content analysis was used to analyze data. Five domains of the Explanatory Model supplementary module of the Cultural Formulation Interview (CFI) were used as coding categories, operationalized as ‘Parents’ understanding of autism’; ‘Autism prototypes’; ‘Causal explanations’; ‘Course of autism’, and ‘Help seeking and treatment expectations’ Results The results showed that parents’ prior knowledge of autism and experience of young children’s typical developmental trajectories, as well as the opinions of children’s grandparents and preschool teachers, affected symptom recognition and help seeking. There were differences in parents’ explanatory models before and after ASD diagnosis. Initial interpretations of the disorder included medical conditions and reaction to environmental influences, while genetic, supernatural/religious factors, and vaccinations were mentioned as definite causes after obtaining a clinical diagnosis. Parents also held multiple explanatory models, influenced by the views of family members and information obtained from media or from health care professionals. Parents’ treatment decisions included use of available state-funded support services, and complementary and alternative treatments. Conclusion The results demonstrate the utility of the CFI’s Explanatory Model supplementary module in autism research. Implications for clinical practice are discussed

Needs of Grandparents of Preschool-Aged Children with ASD in Sweden

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents’ Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs; grandparents’ needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents’ needs essential for planning and provision of quality family-centered early intervention services

Grandparents of Autistic Children – Needs and Intervention

Background: In a family system where an autistic child is present, grandparents’ role has become increasingly important: they provide instrumental and emotional support to their grandchild and adult children. Research has shown that grandparents of autistic children may have their own needs and require support in relation to their autistic grandchildren. To support grandparents of autistic, preschool-aged children, the Autism Center for Young Children (ACYC) at Habilitation &amp; Health in Stockholm offers a day-long, group-based manualized intervention with the main goal to address grandparents’ heterogenous needs and challenges they may face when grandparenting an autistic child. The intervention is multimodal as it combines components from various approaches—psychoeducation, skills training, and the use of support groups. Objectives: The research project consists of three interrelated studies. Study 1 examined perceived needs of grandparents of preschool-aged autistic children in the areas of information, family and social support, financial support, explaining to others, child care, professional support, and community service; and explored associations between grandparents’ needs and their socio-demographic characteristics, and perceptions of grandchildren’s difficulties. Study 2 assessed feasibility and preliminary effectiveness of the group-based psychoeducational intervention program offered to grandparents of young autistic children. Study 3 explores experiences of the grandparents five years after their participation in the intervention program in 2017. Methods: In Study 1 the participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents’ Needs Survey, the SDQ Impact supplement, and the demographic survey were used to collect data. Study 2 used an open pragmatic design and applied a mixed-methods approach to evaluate the intervention’s feasibility and preliminary effectiveness. Study 3 uses a qualitative design with 14 grandparents who participated in semi-structured follow-up interviews. Results: The results from Study 1 showed that grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs; grandparents’ needs were predicted by their perceived burden. Findings from Study 2 demonstrated good feasibility: completion rate was 95%. The results showed increased knowledge about ASD from pre- to post-intervention; qualitative analyses showed grandparents’ appreciation with the opportunity to meet and share experiences with other grandparents. Preliminary findings from Study 3 show grandparents’ active involvement in grandchildren’s lives: they babysit, provide transportation and other instrumental support to their adult children. Findings also indicate higher levels of distress among grandparents who had grandchildren with co-occurring neurodevelopmental conditions, e.g., ADHD, intellectual disability or with chronic medical conditions such as diabetes type 1. Some grandparents may experience social stigma and discrimination toward their grandchild with a disability in local communities.  Conclusions: Findings contribute with increased knowledge about needs and perspectives of grandmothers and grandfathers of autistic children in the context of disability services provision in Sweden. There is a need to design and implement a transdiagnostic intervention aiming at grandparents of children with co-occurring neurodevelopmental conditions to promote the mental health and wellbeing of this population