Short report: COVID-19-related anxiety is associated with mental health problems among adults with rare disorders

Background For adults with rare disorders, COVID-19 can be more severe and deadlier. This may lead to anxiety about COVID-19 among adults with rare disorders, including worries about being infected. COVID-19 anxiety is linked with mental health problems in the general population. Aims To examine the levels of mental health problems and COVID-19 anxiety, and their association, among adults with rare disorders. Methods and procedures Adults with rare disorders (N = 58, Mage = 45.2 years, SD = 12.7, 69.0% females, 31.0% males) answered standardized mental health and COVID-19 anxiety questionnaires online. Their scores were compared with samples without rare disorders. Outcomes and results Mental health problems were higher than in a sample without rare disorders (effect size d = 1.14), as was COVID-19 anxiety (effect size d = 0.53). COVID-19 anxiety correlated significantly with mental health problems (r = .46). Controlling for age, gender, and work status, COVID-19 anxiety explained 16.1% of the variance in mental health problems (ΔR2 = .161, p = .001). Conclusions and implications COVID-19 anxiety is higher than norms and associated with mental health problems for adults with rare disorders. During the pandemic, clinicians are recommended to assess COVID-19 anxiety for patients with rare disorders.publishedVersio

Exposure Quality in Cognitive Behavioral Treatment for Youth Anxiety Disorders—Predictors and Associations with Outcomes

To optimize cognitive behavioral therapy (CBT) outcomes for anxiety disorders in youth, more knowledge is needed about how specific CBT components work. Exposure to feared situations is an effective CBT component. However, there is little observation-based empirical research on how exposure relates to outcomes and other clinical variables. In a randomized controlled community clinic trial for youth with anxiety disorders, observers reliably rated exposure quality for 68 youths aged 8 to 15 years based on 118 videotaped sessions. The treatment program was the manual-based FRIENDS program. Three exposure quality elements (preparation, post-processing, and parent contribution to exposure) were examined in relation to pre-treatment demographic and clinical variables, outcomes, and youth- and therapist-rated alliance using multilevel hierarchical regression models. The outcomes were diagnostic recovery, clinical severity and anxiety symptoms change from pre- to post-treatment and one-year follow-up, and treatment dropout. The results showed that parent contribution to exposure was higher for boys and younger children. Parent contribution to exposure, but no other exposure element, was associated with a larger likelihood of diagnostic recovery and larger clinical severity reduction at one-year follow-up. Exposure quality was unrelated to outcomes at post-treatment, dropout, or alliance. We conclude that enhancing parent contribution to exposure during treatment could improve long-term outcomes after CBT for youth anxiety disorders. Exposure elements should be observed in larger samples to further examine their potential role for CBT outcomes.publishedVersio

Parental internalizing symptoms as predictors of anxiety symptoms in clinic-referred children

Background: Mothers’ and fathers’ internalizing symptoms may influence children’s anxiety symptoms differently. Objective: To explore the relationship between parental internalizing symptoms and children’s anxiety symptoms in a clinical sample of children with anxiety disorders. Method: The sample was recruited through community mental health clinics for a randomized controlled anxiety treatment trial. At pre-intervention, children (n = 182), mothers (n = 165), and fathers (n = 72) reported children’s anxiety symptoms. Mothers and fathers also reported their own internalizing symptoms. The children were aged 8 to 15 years (Mage = 11.5 years, SD = 2.1, 52.2% girls) and all had a diagnosis of separation anxiety, social phobia, and/or generalized anxiety disorder. We examined parental internalizing symptoms as predictors of child anxiety symptoms in multiple regression models. Results: Both mother and father rated internalizing symptoms predicted children’s self-rated anxiety levels (adj. R2 = 22.0%). Mother-rated internalizing symptoms predicted mother-rated anxiety symptoms in children (adj. R2 = 7.0%). Father-rated internalizing symptoms did not predict father-rated anxiety in children. Conclusions: Clinicians should incorporate parental level of internalizing symptoms in their case conceptualizations

Adherence, Competence, and Alliance as Predictors of Long-term Outcomes of Cognitive Behavioral Therapy for Youth Anxiety Disorders

The present study investigated therapist adherence, therapist competence, and patient-therapist alliance as predictors of long-term outcomes of cognitive behavioral therapy (CBT) for anxiety disorders in youth. Potential differential effects for group versus individual CBT, for therapists with or without formal CBT training, and based on youth symptom severity were examined. Videotapes (n = 181) from treatment sessions in a randomized controlled effectiveness trial comprising youth (N = 170, M age = 11.6 years, SD = 2.1) with anxiety disorders were assessed for therapist adherence and competence. Alliance was rated by therapists and youth. Participants completed a diagnostic interview and an anxiety symptom measure at pre-treatment, post-treatment, one-year follow-up, and long-term follow-up (M = 3.9 years post-treatment, SD = 0.8, range = 2.2–5.9 years). The change in anxiety symptoms or diagnostic status from pre-treatment to long-term follow-up was not significantly related to any predictor variables. However, several interaction effects were found. For loss of principal diagnosis, therapist competence predicted positive outcome when therapist adherence also was high. Adherence was found to predict positive outcome if CBT was provided individually. Therapist-rated alliance was related to both loss of principal diagnosis and loss of all diagnoses when CBT was provided in groups. Interaction effects suggested that therapists displaying both high adherence and high competence produced better long-term outcomes. Further, the alliance may be particularly important for outcomes in group CBT, whereas adherence may be particularly important for outcomes in individual CBT.publishedVersio

Predictors of school-based cognitive behavior therapy outcome for youth with anxiety

Meta-analyses of school-based CBT have shown that prevention for anxiety symptoms typically report small but significant effects. There is limited knowledge regarding which youths may benefit most and least from such programs, and characteristics of youth who respond differentially to interventions of different intensity. The present study examined predictors of school-based CBT outcomes among 302 youths (mean age 14.0 years, SD 0.8, 84% female) who participated in a randomized waitlist-controlled trial comparing a 10-session and a 5-session group intervention. Potential predictors included youth and parental factors, and credibility and expectancy of the interventions. Pre-intervention anxiety and depression levels, and clinician rated severity were examined as moderators of intervention effects. Outcomes were youth-, and parent-reported youth anxiety and depressive symptoms at post-intervention and 1-year follow-up. Higher parent-reported impairment from youth anxiety predicted larger parent-reported anxiety and depressive symptom change, whereas higher caregiver strain was associated with less symptom change. Higher parent rated credibility and expectancy was associated with improved outcomes at post-intervention. At 1-year follow-up, no predictors of outcome were identified. No moderators were identified. Families with high levels of caregiver strain associated with youth anxiety may need extra support regardless of length of intervention program. Parents’ credibility and expectancy of interventions should be targeted to optimize school-based CBT.publishedVersio

HPA axis related genes and response to psychological therapies: genetics and epigenetics

Background Hypothalamic–pituitary–adrenal (HPA) axis functioning has been implicated in the development of stress-related psychiatric diagnoses and response to adverse life experiences. This study aimed to investigate the association between genetic and epigenetics in HPA axis and response to cognitive behavior therapy (CBT). Methods Children with anxiety disorders were recruited into the Genes for Treatment project (GxT, N = 1,152). Polymorphisms of FKBP5 and GR were analyzed for association with response to CBT. Percentage DNA methylation at the FKBP5 and GR promoter regions was measured before and after CBT in a subset (n = 98). Linear mixed effect models were used to investigate the relationship between genotype, DNA methylation, and change in primary anxiety disorder severity (treatment response). Results Treatment response was not associated with FKBP5 and GR polymorphisms, or pretreatment percentage DNA methylation. However, change in FKBP5 DNA methylation was nominally significantly associated with treatment response. Participants who demonstrated the greatest reduction in severity decreased in percentage DNA methylation during treatment, whereas those with little/no reduction in severity increased in percentage DNA methylation. This effect was driven by those with one or more FKBP5 risk alleles, with no association seen in those with no FKBP5 risk alleles. No significant association was found between GR methylation and response. Conclusions Allele-specific change in FKBP5 methylation was associated with treatment response. This is the largest study to date investigating the role of HPA axis related genes in response to a psychological therapy. Furthermore, this is the first study to demonstrate that DNA methylation changes may be associated with response to psychological therapies in a genotype-dependent manner

The impact of treatment delivery format on response to Cognitive Behaviour Therapy for pre-adolescent children with anxiety disorders

Background. Several delivery formats of Cognitive Behaviour Therapy (CBT) for child anxiety have been proposed, however there is little consensus on the optimal delivery format. The primary goal of this study was to investigate the impact of the child’s primary anxiety diagnosis on changes in clinical severity (of the primary problem) during individual CBT, group CBT, and guided parent-led CBT. The secondary goal was to investigate the impact of the child’s primary anxiety diagnosis on rates of remission for the three treatment formats. Methods. A sample of 1253 children (5 – 12 years; Mage = 9.3, SD = 1.7) was pooled from CBT trials carried out at 10 sites. Children had a primary diagnosis of Generalised Anxiety Disorder (GAD), Social Anxiety Disorder (SoAD), Specific Phobia (SP) or Separation Anxiety Disorder (SAD). Children and parents completed a semi-structured clinical interview to assess the presence and severity of DSM-IV psychiatric disorders at pre intervention, post intervention and follow-up. Linear mixture modelling was used to evaluate the primary research question and logistic modelling was used to investigate the secondary research question. Results. Children with a primary diagnosis of GAD, SoAD and SAD demonstrated comparable improvements in clinical severity to all three CBT treatment formats. However, children with primary SP showed significantly larger reductions in clinical severity following individual CBT compared to group CBT and guided parent-led CBT. The results were mirrored in the analysis of remission responses with the exception that individual CBT was no longer superior to group CBT for children with a primary SP. Furthermore, the difference between individual and group was not significant when the follow-up data was examined separately. Conclusions. The data show that there may be greater clinical benefit by allocating children with a primary SP to individual CBT, although future research on cost-effectiveness is needed to determine whether the additional clinical benefits justify the additional resources required

"It can save you if you just forget." Closeness and competence as conditions for coping among Ugandan orphans

This qualitative study explores the psychological constructs of closeness and competence as protective factors among Ugandan orphans. Closeness is defined as quality of dyadic relation, quality of care in the family, and supportiveness of the network. Competence is defined as being able, being of use, receiving and taking responsibility, and experience of encountering and handling adversity. Results are based on semi-structured interviews with 8 orphans and their guardians. All informants live in a slum area outside Kampala City, and are connected to a community-based organisation. The rough neighbourhood negatively affects all participants. In child-headed and foster parent-headed households, the quality of relations is poorer than in families headed by biological mothers/grandmother. The child-headed households have problems managing basic routines of everyday life. Children’s sense of competence is evident through schooling, their participation in household chores, and their coping strategies in face of hard living conditions. Children’s coping strategies include forgetting, not thinking about, accepting, adjusting, and getting an education. Although some are contradictory to Western theoretical ideals of handling adversity, these strategies appear to be culturally appropriate. Closeness is found to be significant in providing children with culturally appropriate competence

Development of mental health problems – a follow-up study of unaccompanied refugee minors.

Background: Studies have shown that unaccompanied refugee children have elevated symptoms of post-traumatic stress disorder (PTSD), depression, anxiety, and externalizing problems. Few studies have examined change in this group’s mental health symptoms after resettlement in a new country, particularly for those who arrive to a host country when being under the age of 15. Method: The sample included 75 unaccompanied refugee children (mean age 16.5 years, SD =1.6; 83% boys) who settled in Norway. We examined change in the number of stressful life events, symptoms of PTSD (Child PTSD Symptom Scale; CPSS), and symptoms of anxiety, depression and externalizing problems (Hopkins Symptom Checklist; HSCL-37A) from 6 months after arrival (T1) to 1.9 years (SD =0.6) later (T2) using paired samples t-tests. Linear regression models were used to examine whether length of stay, level of education or change in the number of experienced stressful life events predicted symptom change. Results: There was a small and non-significant change in the mean scores of both symptom scales between T1 and T2, although there was considerable variation among the participants. The number of children who remained above the clinical cut-off value from T1 to T2 was as follows: 28 of 47 (59.6%) on the CPSS and eight of 16 (50.0%) on the HSCL-37A. There was a significant increase in the number of reported stressful life events from T1 to T2. An increase in reported stressful life events predicted an increase in PTSS (ß =1.481, 95% CI .552 to 2.411). Length of stay, increase in stressful life events and level of education did not predict changes in the HSCL-37A. Conclusions: There was no average change in the level of PTSS, depression, anxiety, or externalizing problems in this group of unaccompanied refugee children from shortly after arrival to nearly two years later. The large variation in change scores across informants indicates a need for monitoring the development of mental health problems and securing that the youth’s primary psychosocial needs are met. The high rate of children above clinical cut-off on the symptoms scales and with suicidal ideation indicates that many may be in need of treatment

Gastrointestinal and urinary complaints in adults with hereditary spastic paraparesis

Background Hereditary spastic paraparesis (HSP) is a group of rare genetic disorders affecting the central nervous system. Pure HSP is limited to lower limb spasticity and urinary voiding dysfunction. Complex HSP involves additional neurological features. Beyond the described core symptoms, knowledge about the burden of disease for adults with HSP is limited, particularly regarding gastrointestinal functions, fecal incontinence, and urinary symptoms. Methods We conducted a cross-sectional self-report survey with 108 adult HSP patients (Mage = 57.7 years, SD = 11.5, range 30 to 81; 54.2% females) recruited from a national HSP user group association and a national (non-clinical) advisory unit for rare disorders. HSP data was compared to data from a Norwegian population study, HUNT-3 (N = 46,293). Results The HSP group reported more gastrointestinal and urinary complaints compared to controls. Gastrointestinal complaints included at least “much” complaints with constipation (14.6%) and alternating constipation/diarrhea (8.0%), and at least daily uncontrollable flatulence (47.6%), fecal incontinence (11.6%), and inability to hold back stools (38.5%). Urinary complaints included frequent urination (27.4% > 8 times daily), sudden urge (51.9%) and urinary incontinence (30.5% at least daily/nightly). Conclusion This survey of adults with HSP recruited from non-clinical settings showed constipation, alternate constipation and diarrhea, fecal incontinence, and voiding dysfunction represent considerable problems for many persons with HSP. Health care providers should screen and manage often unrecognized gastrointestinal and fecal incontinence complaints among HSP patients