Characterizing Neurocognitive Impairment in Juvenile Fibromyalgia Syndrome: Subjective and Objective Measures of Dyscognition.

Objectives: Our understanding of brain fog, or dyscognition, among youth with juvenile fibromyalgia syndrome is limited. We aimed to determine the prevalence of subjective (self-reported) and objective dyscognition, as well as factors associated with subjective dyscognition in juvenile fibromyalgia syndrome. Methods: A cross-sectional cohort study of patients (n = 31) 12-17 years old diagnosed with primary juvenile fibromyalgia syndrome and one of their parents from 2017 to 2019. Subjects completed a series of survey measures and patients completed a brief neurocognitive battery. Subjective dyscognition was determined based on scores on the Pediatric Quality of Life Inventory (PedsQL) Cognitive Functioning Scale and Behavior Rating Inventory of Executive Function (BRIEF-2) global executive composite (GEC). Objective dyscognition was defined as impairment of more than two standard deviations in any of the neurocognitive domains. We used Fisher's exact test or Wilcoxon rank-sum test, as appropriate, to compare clinical patients based on the presence of dyscognition. Multivariable logistic regression modeling was performed to determine factors associated with subjective dyscognition. Results: Of the 31 subjects, 65% reported subjective dyscognition and 39% had objective dyscognition, primarily in the domains of psychomotor speed (23%), executive function (23%), and attention (3%). Subjective dyscognition was not indicative of objective dyscognition. Subjective dyscognition was independently associated with functional disability (OR: 1.19 [95% CI: 1.02-1.40]) and anxiety (OR: 1.12 [95% CI: 1.02-1.24]). Discussion: Adolescents with fibromyalgia predominantly experience subjective dyscognition but more than 1/3 also experience objective dyscognition. Future research should explore the impact of interdisciplinary rehabilitation programs on the treatment of dyscognition in youth with JFMS.

Suicidal risk and resilience in juvenile fibromyalgia syndrome: a cross-sectional cohort study.

BACKGROUND: To characterize suicidality among youth with juvenile fibromyalgia syndrome (JFMS) receiving treatment from pediatric rheumatologists at a tertiary care center in order to determine the prevalence of suicidality in JFMS and to explore risk factors for persistent suicidal ideation. METHODS: We performed a cross-sectional cohort study of children 12-17 years old with JFMS seen in a specialty pediatric rheumatology pain clinic from 7/2017-9/2019. All subjects completed patient-reported outcomes measures, complemented by retrospective chart review. Subjects who endorsed item 8 on the Children's Depression Inventory, 2nd Edition (CDI-2) were categorized as endorsing suicidal ideation. We assessed for differences between the suicidal and non-suicidal patients using Wilcoxon-rank sum test. Logistic regression modeling was performed to identify psychosocial factors associated with suicidality. RESULTS: Of the 31 subjects, more than one-quarter endorsed suicidality. Nearly 90% of teens with suicidal ideation were established in outpatient counseling. In bivariate analyses, suicidality was associated with lower resilience and greater depression and anxiety (all p < 0.05). Pain intensity trended towards a statistically significant positive association (OR: 1.16 [0.99-1.37]; p = 0.06). Lower resilience was independently associated with suicidality (OR: 0.90 [95% CI: 0.82-0.98]; p < 0.02). CONCLUSIONS: Suicidality was prevalent among youth with JFMS and persistent despite concurrent receipt of mental health services. Higher patient-level resilience was independently associated with a reduced odds of suicidality. Future work should examine the role of resilience training on reducing psychological distress and mitigating the risk of suicidality in JFMS.

Longitudinal Impact of Parental Catastrophizing on Child Functional Disability in Pediatric Amplified Pain.

OBJECTIVE: Children with amplified musculoskeletal pain (AMPS) experience significant functional disability, with impairment in their ability to participate in age-appropriate activities of daily living. Parental factors play an important role in a child's pain symptoms and treatment outcomes, with parental pain catastrophizing and protective behaviors linked to several maladaptive outcomes for children. Aims of the current study were to examine how parental pain catastrophizing, child pain catastrophizing, and parental protective behaviors longitudinally impacted functional disability for children with AMPS. METHODS: Archival data were examined from parent-child dyads presenting to a tertiary pain clinic for treatment of AMPS. Over 1 year, parents completed measures assessing the level of pain catastrophizing, common behavioral responses to child pain, and child functional disability. Children completed measures of pain catastrophizing and functional disability. Measures were collected at initial evaluation, 6-months, and 12-months. Latent growth models (LGM) were conducted to examine how to study variables longitudinally impacted the rate of change in child functional disability. RESULTS: Examining a comprehensive LGM of study variables, parental catastrophizing emerged as the sole contributing factor to slower improvement in functional disability. CONCLUSIONS: The strong influence of parental pain catastrophizing on functional disability may relate to parents limiting behaviors that promote adaptive coping in children with pain. As such, parents who catastrophize may benefit from specific interventions to increase their use of adaptive behavioral responses, such as redirecting children to complete functional activities and encouraging the use of positive coping skills for pain-related distress.

Predicting suicidal ideation in adolescents with chronic amplified pain: The roles of depression and pain duration.

The rates of suicidal ideation and completed suicide among adolescents have become increasingly alarming in recent years. Epidemiological studies indicate that a large portion of adolescents suffer from chronic pain, which research supports as a risk factor for suicidal ideation and behaviors. Further, psychological factors may account for the associations between chronic pain and suicidality. The current study sought to fill gaps in the literature on chronic pain and suicidality in adolescents, by examining whether depression mediates the links between various chronic amplified pain symptoms and suicidal ideation. Retrospective medical record reviews were conducted of 453 adolescents ages 11-17 (M = 14.34, SD = 1.83), who presented to a tertiary pain clinic and received a diagnosis of amplified pain. Prior to their initial appointment, participants completed measures assessing pain symptoms, disability, depression, and suicidality. We found pain duration was significantly related to suicidal ideation, however, this association was mediated by depressive symptoms. These results highlight the need for early screening and intervention for depressive symptoms among adolescents suffering from amplified pain. Clinical recommendations for mental health and medical providers are discussed. (PsycINFO Database Record

Health literacy variables related to parents' understanding of their child's cancer prognosis.

BACKGROUND: Obtaining an accurate understanding of a child's cancer prognosis can help parents make informed decisions about treatment. Research has shown that parents tend to overestimate their child's cancer prognosis relative to physicians. Thus, we examined whether the content of physician communication, parent sources of medical information, and parent demographic factors affected the association between oncologist and parent estimates of a child's cancer prognosis. PROCEDURE: Families were recruited 3-8 weeks after a child's new diagnosis or relapse of cancer. Parents (77 mothers; 42 fathers) completed questionnaires regarding their sources of medical information, age, and education. The child's oncologist reported on the content of their communication with parents regarding prognosis. Parents and oncologists estimated the child's chance of 5-year survival using a visual-analogue scale. RESULTS: Mothers and fathers reported a more favorable prognosis for their child, which was on average about 30% higher than oncologists. Time since diagnosis was correlated with less discrepancy between physician and mother prognosis ratings, with a similar trend noted for fathers. Agreement between oncologists and parents was better for younger fathers, but it was unrelated to physician communication, sources of medical information, or other demographic factors. CONCLUSIONS: Fathers' age may be important to their understanding of their child's cancer prognosis, but we did not find support for other factors related to prognosis literacy. Given the homogeneity of our sample, future research should assess differences in parents' prognosis knowledge across cancer diagnosis, race, ethnicity, and socioeconomic status (SES), which may aid in developing interventions to improve parent understanding.

A qualitative study of advice from bereaved parents and siblings.

Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40 families (65 parents, 39 siblings) of children who died from cancer 6-19 months earlier. Content analysis emphasized the individual nature of grief and revealed advice that fit into three temporal categories: before the death, soon after, and long-term. Findings are discussed in the context of contemporary theory and provide insight into the development and timing of grief interventions.

Direct observation of mother-child communication in pediatric cancer: assessment of verbal and non-verbal behavior and emotion.

OBJECTIVE: To examine the acceptability and feasibility of coding observed verbal and nonverbal behavioral and emotional components of mother-child communication among families of children with cancer. METHODS: Mother-child dyads (N=33, children ages 5-17 years) were asked to engage in a videotaped 15-min conversation about the child's cancer. Coding was done using the Iowa Family Interaction Rating Scale (IFIRS). RESULTS: Acceptability and feasibility of direct observation in this population were partially supported: 58% consented and 81% of those (47% of all eligible dyads) completed the task; trained raters achieved 78% agreement in ratings across codes. The construct validity of the IFIRS was demonstrated by expected associations within and between positive and negative behavioral/emotional code ratings and between mothers' and children's corresponding code ratings. CONCLUSIONS: Direct observation of mother-child communication about childhood cancer has the potential to be an acceptable and feasible method of assessing verbal and nonverbal behavior and emotion in this population.

The role of coping and temperament in the adjustment of children with cancer.

OBJECTIVE: To examine the extent to which stress, coping, and temperament accounted for variability in adjustment among children with cancer. METHODS: Seventy-five mothers of children with cancer (ages 5-17) completed questionnaires regarding their child's cancer-related stress; coping; temperament characteristics including positive affect (PA), negative affect (NA), and effortful control (EC); and symptoms of anxiety and depression. Assessments occurred within one year of initial diagnosis or relapse (M = 5.74 months; SD = 4.72). RESULTS: Cancer-related stress was positively associated with symptoms of depression in children. NA was positively associated with symptoms of anxiety and depression. Primary control coping moderated the association between NA and depression, and primary and secondary control coping mediated this association. CONCLUSION: Results partially support the utility of an integrated model including cancer-related stress, coping, and NA in identifying children at risk for internalizing symptoms during treatment. Additional research is needed to inform interventions for this population.

Survivors of childhood cancer and comparison peers: the influence of peer factors on later externalizing behavior in emerging adulthood.

OBJECTIVE: To examine group differences and predictors of externalizing behavior and substance use during the transition to emerging adulthood (i.e., ages 18-25) among survivors of childhood cancer and comparison peers. METHODS: Peer acceptance and social behavior were assessed in classrooms of 55 children (ages 8-15) during cancer treatment. Children with cancer, comparison peers (n = 60), and parents completed measures of externalizing behavior and/or substance use during an initial home visit and soon after participants turned 18. RESULTS: At follow-up, survivors and peers exhibited similar externalizing behaviors and substance use, except peers were more likely to use marijuana. Substance use was associated with earlier peer acceptance and social behavior. Survivors who were older at diagnosis were at greater risk for later externalizing behavior and substance use. CONCLUSIONS: Mean externalizing behaviors and substance use generally fell within normative ranges for both survivors and peers. Some survivors may benefit from interventions to reduce risk behavior.