A narrative review of the literature on illness uncertainty in hypermobile ehlers-danlos syndrome: implications for research and clinical practice.

BACKGROUND: Hypermobile Ehlers-Danlos syndrome (hEDS) is characterized by joint and skin laxity, and often accompanied by chronic pain, dysautonomia, increased distress and, functional limitations. The journey to accurate diagnosis is often prolonged due to unclear etiology of symptoms. This manuscript is a narrative review of the literature on illness uncertainty (IU) in hEDS, highlighting the unique facets of IU in this population, as compared to the broader chronic pain population (given symptom overlap between these two disease groups), that warrant additional investigation. Additionally, we considered the unique challenges associated with IU in the context of the developmental nuances of pediatric populations. Specifically, we aimed to (1) map the extant literature of the IU experience in chronic pain conditions broadly including the pediatric and adult research to identify key concepts related to IU and incorporate potential developmental considerations in IU; (2) delineate and describe the IU experience specifically in patients with hEDS, with the goal of identifying gaps in the literature based on aspects of presentation in hEDS that do and do not differ from the broader chronic pain population; and (3) elucidate the potential areas of adverse impact of IU in both general chronic pain populations, and those with hEDS specifically, to provide actionable areas for future research and clinical care of individuals with hEDS. Results of this review indicate that IU has been well-studied in chronic pain generally, but inadequately evaluated in hEDS specifically. Specific features of hEDS (complexity of the disorder, involvement of multiple bodily systems, contribution of organic pathology) may uniquely contribute to IU in this population. This review suggests that ambiguities surrounding the diagnosis of hEDS, symptom course, and treatment recommendations, along with misdiagnosis, perceived dismissal of symptoms, or attribution of symptoms to mental health concerns might increase risk for IU and related distress in patients. CONCLUSION: Findings from the present review suggest that distinct features of hEDS yield a set of driving factors for IU that may be somewhat different than those faced by patients with chronic pain or other medical conditions. The development of a validated measure of IU to appropriately assess this construct in patients with hEDS is a research priority. In the clinical setting, providers should be attentive to the potentially aversive diagnostic and treatment experiences reported by patients and attempt to provide clear explanations based on the extant knowledge of hEDS, and implement best-practice recommendations for multidisciplinary treatment.

Insufficient Assessment and Treatment of Vitamin D in the Medical Management of Adolescents with Anorexia Nervosa.

PURPOSE: Suboptimal vitamin D levels are implicated in low bone mineral density, a common medical complication of anorexia nervosa. This study aimed to examine the frequency of vitamin D assessment and treatment for adolescents with anorexia nervosa in outpatient medical management. DESIGN AND METHODS: Retrospective chart review was used to examine 179 adolescents (M age = 15.5 years, SD = 2.2), newly diagnosed with anorexia nervosa at a tertiary care medical center in the United States between January 2000 and July 2016. RESULTS: Only 16% of patients (n = 29) received serum vitamin D assessments following diagnosis, of whom 52% had suboptimal vitamin D levels (n = 15). Only three patients with suboptimal vitamin D were advised to begin supplementation. No patients in our sample were encouraged to begin prophylactic vitamin D supplementation. CONCLUSIONS/PRACTICE IMPLICATIONS: Findings from this study highlight the critical need for widespread care team education about vitamin D assessment and treatment in the medical management of adolescents with anorexia nervosa, particularly in light of the potentially serious consequences of bone mineral density.

Improvements in Sleep Correlate With Improvements in Clinical Outcomes Among Adolescents Undergoing Intensive Interdisciplinary Pain Treatment.

OBJECTIVES: Intensive interdisciplinary pain treatment (IIPT) programs have been shown to restore function, improve coping, and reduce pain in adolescents with chronic pain. Yet, little is known about patients' sleep during IIPT and whether or not improvements in pain treatment outcomes are associated with changes in sleep pre-to-post IIPT treatment. The objectives of the current study were to describe sleep among adolescents entering IIPT and examine associations between sleep parameters and IIPT treatment effects. MATERIALS AND METHODS: Self-reported sleep measures and clinical outcomes (eg, functional disability, coping, average pain), were collected from 44 adolescents (mean age=14.57, 68.2% female) at admission and discharge from an inpatient IIPT program. Wrist-worn actigraphy data and sleep diaries from participants' first week and last week in the program were analyzed to characterize sleep parameters. RESULTS: Participants self-reported poor sleep/wake patterns, high levels of insomnia symptoms, and subclinical problems with daytime sleepiness upon admission into IIPT, although actigraphic indices of sleep from the first week of IIPT admission were only just under clinical guidelines for healthy adolescent sleep. Better self-reported sleep quality assessed via aggregated sleep diaries from the first week was associated with improvement in average pain and disability over the course of the program. Furthermore, improvements in insomnia symptoms and daytime sleepiness throughout the program were positively correlated with concurrent improvements in functional disability and coping. DISCUSSION: Taken together, results suggest that sleep may be associated with IIPT treatment effects and pave the way for future research to continue examining these relationships.

Sleep among Youth with Severely Disabling Chronic Pain: Before, during, and after Inpatient Intensive Interdisciplinary Pain Treatment.

Poor sleep is commonly reported in pediatric chronic pain. There are signals that intensive interdisciplinary pain treatments (IIPT) may inadvertently improve objective sleep, but this claim cannot be substantiated without baseline sleep data prior to IIPT. This study followed the objective sleep/wake patterns (e.g., duration, quality, timing, consistency) of pediatric patients with severely functionally disabling chronic pain before, during, and after inpatient IIPT (the Functional Independence Restoration Program-"FIRST Program"), alongside a similarly-disabled chronic pain Comparison Group. The final sample included N = 10 FIRST Patients and N = 9 Comparison Group patients. At baseline, the whole sample showed healthy sleep duration (~9 h), average sleep efficiency <90%, late sleep onset and offset (mean = 11:56 p.m.-8:50 a.m.), and highly inconsistent sleep schedules night to night. During IIPT, FIRST Patients maintained healthy sleep durations, moved sleep schedules 2 h earlier, and decreased timing and duration variability by >60 min while the Comparison Group maintained similar sleep to baseline. At follow up (1-2 months later), FIRST Patients' sleep schedules shifted later but were still less variable than at baseline. Results point to the malleability of sleep/wake patterns within treatment contexts with strict environmental control but suggest that these gains may be difficult for youth with chronic pain to maintain in the home environment.

Predictors of improvement in a family-based partial hospitalization/intensive outpatient program for eating disorders.

The efficacy of family-based treatment (FBT) in outpatient settings has led to efforts to incorporate FBT principles into higher levels of care. The present study examined predictors of improvement in an FBT-based partial hospitalization program/intensive outpatient program (PHP/IOP) as measured by the Eating Disorder Examination-Questionnaire. Participants were 113 patients with anorexia nervosa (AN) or eating disorder not otherwise specified (EDNOS) consecutively participating in an FBT-based PHP/IOP. Multilevel modeling was used to investigate predictors for adolescents and young adults separately. Predictors considered included illness duration, previous hospitalization, hospitalization immediately prior to treatment, previous outpatient therapy, hospitalization during treatment, diagnosis, gaining 4 pounds in 4 weeks, and family status as time-invariant variables. Time-varying variables considered included depression symptoms and mothers'/fathers' ratings of parental self-efficacy and expressed emotion. For adolescents, depression by time and diagnosis by time interactions were statistically significant. At all levels of depression, adolescent patients with AN demonstrated greater reductions in eating disorder symptoms compared to patients with EDNOS. For young adults, depression and gaining 4 pounds in 4 weeks were significant predictors. The relationships for young adults were curvilinear such that, while lower eating disorder symptoms were found during treatment, these gains were not maintained at follow up.

Complementary Parent Components for Pediatric Pain Families: Innovations in Treatment.

For families with a child with chronic pain, the home environment is the context in which adaptive or maladaptive illness behaviors are developed. Supporting families to effectively cope with their child's chronic pain is a critical need. This work analyzes intervention approaches from emerging treatment programs to support families coping with pediatric pain that diverge from traditional treatment models by specifically targeting parents. Two novel parent intervention programs are presented that consider caregiver needs in both outpatient and inpatient pain treatment settings: Parents as Coping Coaches and Putting Parents FIRST. These programs are evaluated through comparing parental training components across different stages of treatment. Additionally, the efficacy of Putting Parents FIRST in promoting maintenance of children's functional gains achieved in intensive interdisciplinary pain treatment is presented, and compared to previous results of the efficacy of Putting Parents FIRST. Specifically, outcomes of 36 children whose parents received the intervention in Putting Parents FIRST were compared to a matched control sample of children whose parents did not receive the parent intervention. Similar to the findings from Parents as Coping Coaches, results indicated that patients whose parents received the intervention maintained/improved program gains in disability, coping, and pain significantly more than patients whose parents did not receive the intervention. Implications for parent-focused intervention development efforts targeting parent and youth functioning in the context of pediatric chronic pain are considered.

Acceptance and Commitment Therapy for Trichotillomania: A Randomized Controlled Trial of Adults and Adolescents.

The purpose of this study was to examine acceptance and commitment therapy (ACT) as a standalone treatment for trichotillomania in a randomized controlled trial of adults and adolescents. Participants consisted of a community sample of treatment seeking adults and adolescents with trichotillomania. Of the eligible 39 participants randomized into treatment and waitlist groups, 25 completed treatment and were included in the final analysis. Treatment consisted of a 10-session ACT protocol. Multiple mixed models repeated measures analyses were utilized to evaluate changes in trichotillomania symptom severity, daily number of hairs pulled and urges experienced, and experiential avoidance from pretreatment to posttreatment. Findings indicated significant changes in symptom severity and daily hairs pulled, but not daily urges experienced or psychological flexibility. However, psychological flexibility saw a 24.5% decrease in the treatment group and reduced from clinical to subclinical levels on average. This study suggests that ACT alone is an effective treatment for adults and adolescents with trichotillomania. Outcomes appear to be similar to trials that combined ACT and habit reversal training (HRT).

The Impact of Spatial Distribution of Pain on Long-Term Trajectories for Chronic Pain Outcomes After Intensive Interdisciplinary Pain Treatment.

OBJECTIVES: Evidence for the effectiveness of intensive interdisciplinary pain treatment (IIPT) for pediatric chronic pain is growing; however, little research has considered factors that contribute to differences in patients' treatment response. The present study utilized multilevel modeling to examine trajectory of change over time in functional disability from clinic assessment to 6-month follow-up in pediatric patients participating in IIPT, considering spatial distribution of pain, coping efficacy, and pain intensity. MATERIALS AND METHODS: Participants included 110 pediatric patients (Mage=14.65, SD=2.37; localized pain, 27.3%; widespread pain, 72.7%) consecutively admitted into IIPT. Patients completed self-report measures of functional disability, pain intensity, and coping efficacy at pretreatment assessment, admission, weekly during IIPT, discharge, and several follow-ups. RESULTS: Analysis identified a model with 3 three-way interactions, including time, time squared, pain intensity, coping efficacy, and pain distribution, on functional disability. The spatial distribution of pain had the greatest impact on treatment trajectory in patients with widespread pain, high pain intensity, and poor coping efficacy; these patients demonstrated greater functional disability compared with patients with localized pain. In addition, patients with widespread pain and poor coping efficacy had the most functional disability across all levels of pain intensity. Patients with localized pain and poor coping efficacy demonstrated initial treatment gains, but evidenced an increase in functional disability at follow-up. DISCUSSION: Overall, spatial distribution of pain, coping efficacy, and pain intensity played an important role in patients' response to treatment. Better understanding of these variables could improve treatment response, particularly for the most severely disabled chronic pain patients.

Measurement of leadership skills development among veterinary students and veterinary professionals participating in an experiential leadership program (the Veterinary Leadership Experience).

OBJECTIVE: To evaluate outcomes associated with an experiential leadership program (the Veterinary Leadership Experience [VLE]) among participants 1 year after program completion. SAMPLE: 157 veterinary students and 61 veterinary professionals who participated in the 2015 or 2016 VLE. PROCEDURES: Participants completed various instruments to assess emotional intelligence, psychological flexibility, resilience, and client-communication skills prior to (pretest) and 1 year after (posttest) attending the VLE; pretest and posttest findings were compared for all but client-communication skills, for which only posttest responses were analyzed. An additional posttest instrument assessed the impact that the VLE had on key knowledge areas (ie, self-awareness, self-management, social awareness, relational competence, communication skills, and conflict management skills) and overall impact. RESULTS: 1 year after completing the VLE, participants reported that the program had a high impact on all key knowledge areas; the impact on social awareness and overall impact was significantly higher for veterinary students than for veterinary professionals. Veterinary professionals reported a greater increase in emotional intelligence after program completion than did veterinary students. For each assessed client-communication skill, the percentage of veterinary professionals who reported increased confidence in that skill after program completion was lower than the corresponding percentage of veterinary students. Resilience and psychological flexibility scores did not increase after program completion. CONCLUSIONS AND CLINICAL RELEVANCE: Assessment of the effectiveness and long-term outcomes of experiential leadership programs is important to understanding whether such programs are having the intended effect. Veterinary students and veterinary professionals who were assessed 1 year after completing the VLE reported improvements in leadership skills foundational to the program.

Medical Assessment and Triage of Pediatric Patients with Anorexia Nervosa in Primary Care.

OBJECTIVE: To examine the medical assessment and triage of pediatric patients with anorexia nervosa (AN) initially seen in primary care. METHODS: A retrospective cohort study was conducted for all pediatric patients with AN who had eating/weight concerns and initially identified symptoms in primary care in a single health care system between January 1, 2010, and December 31, 2016. Information on presenting concern, medical assessment/laboratory tests, clinical diagnoses, treatment recommendations, and referrals were abstracted from the medical record. RESULTS: Forty-one (mean age = 13.7 years; SD = 2.2) pediatric patients with AN had eating/weight concerns and initially identified symptoms in a primary care. Overall, only 5% (n = 2/41) of patients received an AN diagnosis during the index visit; a minority were assessed for electrolyte disturbance (n = 20), electrocardiogram abnormality (n = 18), hypothermia (n = 13), binge/purge behaviors (n = 13), orthostatic hypotension (n = 2), or dehydration (n = 1), and only 56% (n = 23) received triage consistent with practice recommendations. Although 61% (n = 25) met criteria for inpatient admission, inpatient hospitalization was recommended for only 2 patients. Patients who received triage consistent with practice recommendations received AN diagnosis and treatment significantly earlier than those who did not (p < 0.01 and p = 0.001, respectively). CONCLUSION: Findings suggest that pediatric patients with AN may not be receiving medical assessment and triage per practice recommendations in the primary care setting. Understanding barriers to evidence-based care for pediatric eating disorders may inform provider education and system-wide changes to enhance outcomes in these patients.

Motivation for sport participation and eating disorder risk among female collegiate athletes.

In light of conflicting research regarding eating disorder risk and sports participation, the current study examined the relationship between specific aspects of sports participation (i.e., level of competition, leanness requirements, and physical/cardiovascular intensity level), an individual's motivation for sports participation, and eating disorder symptomatology/risk. Participants included 319 female collegiate athletes (M age = 19.88; SD = 1.62) representing a variety of sports and competition levels. Multilevel modeling found that level of competition, receiving a scholarship, age, and years of collegiate sport played did not predict eating disorder risk. In the final model, there was a significant interaction between intrinsic motivation and sport intensity. For high intensity sports, higher levels of intrinsic motivation were associated with lower eating disorder risk. For low intensity sports, the level of intrinsic motivation did not impact eating disorder risk. For all sport intensities, extrinsic motivation was associated with a higher eating disorder risk. Results suggest that it is not the specific sport but athletes' motivation for those sports with high physical/cardiovascular intensity and leanness requirements that is associated with untoward consequences. The results clarify conflicting results previously reported in the literature that have primarily employed univariate analyses and have implications for athletic development programs.

Parenting in the Context of Children's Chronic Pain: Balancing Care and Burden.

Parents of youth with chronic health conditions encounter numerous challenges in supporting their children across pediatric treatment contexts. Structural barriers to care, such as access issues and coordinating care across school, health, and family settings, can exacerbate challenges to daily functioning. Parents are often concomitantly managing their child's chronic condition, their own health care needs, work and family demands. For these parents, accomplishing a manageable "work-life balance" feels elusive, if not impossible, when a chronic health condition is part of family life. Based on a recent symposium presentation, combined perspectives from the disciplines of pediatric psychology, parenting, and human development and family studies consider key challenges and opportunities to assist parent coping with stress associated with caregiving amidst pervasive changes in healthcare service delivery. Two innovative interventions to support parents in both an outpatient ("Parents as Coping Coaches") and an inpatient ("Putting Parents FIRST") context are described, with commonalities and unique aspects highlighted for each. These programs are considered in reference to a rapidly changing healthcare landscape, growing focus on the family as a core context for care, and importance of parent/caregiver self-care and crucial role in supporting children's long-term health and resiliency.

Five-year prospective investigation of self-harm/suicide-related behaviors in the development of borderline personality disorder.

Although borderline personality disorder (BPD) is frequently characterized by nonsuicidal self-injurious behavior (NSSI), suicide attempts (SA), suicidal ideation (SI), and/or suicide threats (ST), it is unclear whether these behaviors are precursors of BPD in adolescence. This study examined self-harm/suicide-related behaviors in the development of BPD from adolescence to adulthood in psychiatrically hospitalized adolescents. Participants were 116 adolescents consecutively admitted for a psychiatric hospitalization for self-harm/suicide-related behaviors. Adolescents completed self-report questionnaires assessing self-harm/suicide-related behaviors, maladaptive familial behavior, and peer victimization upon admission. Admission diagnoses and history of sexual/physical abuse were abstracted from medical/psychiatric records. Five years after index hospitalization, medical/psychiatric records were systematically reviewed and information on diagnoses was collected. Using multivariable logistic regression analyses, ST predicted BPD above and beyond NSSI, SA, and SI 5 years later (odds ratio = 1.31, 95% confidence interval [1.06, 1.62], p > .01). Traditional risk factors of BPD were not predictive of BPD at 5-year follow-up. Suicidal threats are an important risk factor in adolescents who engage in self-harm/suicide-related behaviors that may differentiate those adolescents who go on to develop BPD as adults. Implications for research and treatment are discussed. (PsycINFO Database Record

Acceptance and commitment therapy for anxiety and OCD spectrum disorders: an empirical review.

A fair amount of research exists on acceptance and commitment therapy (ACT) as a model and a treatment for anxiety disorders and OCD spectrum disorders; this paper offers a quantitative account of this research. A meta-analysis is presented examining the relationship between psychological flexibility, measured by versions of the Acceptance and Action Questionnaire (AAQ and AAQ-II) and measures of anxiety. Meta-analytic results showed positive and significant relationships between the AAQ and general measures of anxiety as well as disorder specific measures. Additionally, all outcome data to date on ACT for anxiety and OCD spectrum disorders are reviewed, as are data on mediation and moderation within ACT. Preliminary meta-analytic results show that ACT is equally effective as manualized treatments such as cognitive behavioral therapy. Future directions and limitations of the research are discussed.

Attention-deficit hyperactivity disorder in children with high intelligence quotient: results from a population-based study.

OBJECTIVE: To compare the characteristics of children with attention-deficit hyperactivity disorder (ADHD) who have high intelligence quotient (IQ) versus normal and low IQ through long-term follow-up of children with ADHD from a population-based birth cohort. METHODS: Subjects included children with research-identified ADHD (N = 379) from a birth cohort (N = 5718). Full scale IQ scores obtained between ages 6 and 18 years were used to categorize children into 3 groups: Low (IQ < 80), Normal (80 ≤ IQ < 120), and High IQ (IQ ≥ 120). Subjects were retrospectively followed up from birth until emigration, death, or high school graduation/dropout. The groups were compared on demographic characteristics, age at which ADHD case criteria were met, comorbidities, treatment, and school outcomes. RESULTS: There were no significant differences among children with high (N = 34), normal (N = 276), or low IQ (N = 21) and ADHD in numerous characteristics, including median age at which ADHD criteria were fulfilled (9.5, 9.7, and 9.8 years); rates of comorbid learning disorders (85.3%, 78.3%, and 76.2%), psychiatric disorders (47.1%, 50.4%, and 47.6%), and substance abuse (17.6%, 23.6%, and 19.0%); and rates of stimulant treatment (79%, 75%, and 90%). In comparison to children with normal or low IQ, those with high IQ had mothers with higher educational levels (e.g., college graduation rates 44.1%, 11.6%, and 14.3%), and higher reading achievement (median national percentiles on standardized reading tests 77.0, 42.0, and 29.0, p < 0.001). CONCLUSIONS: These findings suggest that ADHD is similar among children with high, normal, and low IQ, although high IQ may favorably mediate some outcomes such as reading achievement. Diagnosis and treatment of ADHD are important for all children, regardless of cognitive ability.

Brief report: childhood disintegrative disorder: a brief examination of eight case studies.

Childhood disintegrative disorder (CDD) is a rare condition characterized by distinct regression of developmental and behavioral functioning following a period of apparently normal development for at least 2 years. The purpose of this article is to present the developmental, behavioral, psychosocial, and medical histories of eight children who have been diagnosed with CDD in an attempt to advance the understanding of this rare disorder. Results indicate the average age of onset was 3.21 years. Three cases reported an insidious onset while two cases exhibited acute onset. Developmental and behavioral milestones were met at age appropriate times in each case and significant deterioration of formerly acquired skills and abnormalities in functioning were clinically present in all eight cases.