The Relationship of Family Factors to Psychosocial Outcomes in Children with Hypoplastic Left Heart Syndrome at 6 Years of Age.

OBJECTIVE: The objective of this study was to describe the relationships between family factors and outcomes for children with hypoplastic left heart syndrome (HLHS). STUDY DESIGN: This cross-sectional study was ancillary to the Pediatric Heart Network Single Ventricle Reconstruction Extension Study to examine family factors including parental mental health, quality of life (QOL), family resources, function and management, and their relationships to child psychosocial outcomes (adaptive behavior, internalizing and externalizing behaviors and health-related quality of life [HRQOL]) at 6 years of age. RESULTS: Participants were parents (115 mothers, 71 fathers) of children with HLHS. Parents reported anxiety, QOL and family resources that were worse than the general population; 33% reported family dysfunction. There were no meaningful differences between reports from mothers and fathers. Parental perception of better child health was associated with better family management of the condition (P < .05). Several family management factors explained a moderate amount of variance in adaptive behavior (ΔR2 = 0.08-0.14), adaptive skills (ΔR2 = 0.19-0.21), and HRQOL scores (ΔR2 = 0.04-0.18); little variance was explained in internalizing problems (ΔR2 = 0.02-0.03) (all P < .05) above and beyond demographic and clinical variables. CONCLUSIONS: HLHS has a significant impact on both children and families. Relationships between child and family characteristics may impose risk or protection. Improved understanding of these associations should guide counseling and tailored interventions.

Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.

Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Individually tailored psychosocial support is needed.

Recruitment, retention, and adherence in a clinical trial: The Pediatric Heart Network's Marfan Trial experience.

BACKGROUND/AIMS: The Pediatric Heart Network Marfan Trial was a randomized trial comparing atenolol versus losartan on aortic root dilation in 608 children and young adults with Marfan syndrome. Barriers to enrollment included a limited pool of eligible participants, restrictive entry criteria, and a diverse age range that required pediatric and adult expertise. Retention was complicated by a 3-year commitment to a complex study and medication regimen. The Network partnered with the Marfan Foundation, bridging the community with the research. The aims of this study are to report protocol and medication adherence and associated predictive factors, and to describe recruitment and retention strategies. METHODS: Recruitment, retention, and adherence to protocol activities related to the primary outcome were measured. Retention was measured by percentage of enrolled participants with 3-year outcome data. Protocol adherence was calculated by completion rates of study visits, ambulatory electrocardiography (Holter monitoring), and quarterly calls. Medication adherence was assessed by the number of tablets or the amount of liquid in bottles returned. Centers were ranked according to adherence (high, medium, and low tertiles). Recruitment, retention, and adherence questionnaires were completed by sites. Descriptive statistics summarized recruitment, retention, and adherence, as well as questionnaire results. Regression modeling assessed predictors of adherence. RESULTS: Completion rates for visits, Holter monitors, and quarterly calls were 99%, 94%, and 96%, respectively. Primary outcome data at 3 years were obtained for 88% of participants. The mean percentage of medication taken was estimated at 89%. Site and age were associated with all measures of adherence. Young adult and African American participants had lower levels of adherence. Higher adherence sites employed more strategies; had more staffing resources, less key staff turnover, and more collaboration with referring providers; utilized the Foundation's resources; and used a greater number of strategies to recruit, retain, and promote protocol and medication adherence. CONCLUSION: Overall adherence was excellent for this trial conducted within a National Institutes of Health-funded clinical trial network. Strategies specifically targeted to young adults and African Americans may have been beneficial. Many strategies employed by higher adherence sites are ones that any site could easily use, such as greeting families at non-study hospital visits, asking for family feedback, providing calendars for tracking schedules, and recommending apps for medication reminders. Additional key learnings include adherence differences by age, race, and site, the value of collaborative learning, and the importance of partnerships with patient advocacy groups. These lessons could shape recruitment, retention, and adherence to improve the quality of future complex trials involving rare conditions.

Flexor tenectomy: salvage surgery following feline onychectomy.

OBJECTIVES: Onychectomized cats (Felis catus) with inappropriate elimination behaviors or aggression may be responding to painful paw pathology, even several years after the initial onychectomy. The objectives of this study were to evaluate the onychectomized toes of this population of cats for pain (thorough physical examination and/or buprenorphine trial), pathological changes (using high-resolution radiographs) and response to tenectomy in those with hyperflexion of the proximal interphalangeal joint. METHODS: Cats in this study were previously onychectomized and exhibited inappropriate behaviors (inappropriate elimination, biting), exhibited pain associated with the onychectomy site or had behavioral improvements when put on a 2-week buprenorphine trial. A detailed history was obtained, including verification of proper litter box placement and management. Physical examinations included a close analysis of the onychectomized digits for resistance to extension and pain on palpation. Only cats with a normal urinalysis were included in the study. High-resolution radiographic imaging was performed on all study cats. A total flexor tenectomy was performed on cats with hyperflexion of the proximal interphalangeal joints. RESULTS: All 42 cats included in the study benefited from total flexor tenectomy surgery. Two cats remained biters, even after a long course of analgesic medication. All cats walked more comfortably post-tenectomy surgery. CONCLUSIONS AND RELEVANCE: Onychectomy can lead to pain, inappropriate elimination and aggressive behavior. The presented salvage tenectomy procedure can alleviate or eliminate inappropriate behaviors by reducing the pain from the original onychectomy.

What Is Your Diagnosis?

In collaboration with the American College of Veterinary Radiology.

Psychometric properties of Darryl, a cartoon based measure to assess community violence-related PTSD in children.

OBJECTIVE: To examine the reliability and validity of Darryl, a cartoon-based measure of PTSD symptoms and a screening tool for identifying children and adolescents with a PTSD diagnosis. METHOD: Exposure to community violence, PTSD symptoms and diagnostic status were assessed in a sample of 49 children and adolescents at an urban outpatient psychiatry clinic. RESULTS: Darryl has good internal consistency for the full scale and adequate reliability for each DSM-IV PTSD symptom cluster. Darryl correlates significantly (r = 0.64, P < 0.001) with the most frequently used measure for assessing PTSD in children (CPTSD-RI). As a screening tool, Darryl has excellent sensitivity and specificity in relationship to the KID-SCID. CONCLUSIONS: In comparison to other child PTSD measures, Darryl has comparable or better psychometric properties and assesses PTSD symptoms in a more developmentally appropriate manner, especially in the domain of community violence. The value of Darryl as a screening tool remains preliminary given the limited number of diagnosed cases of PTSD in the study sample. Full scale efforts at replication are warranted.

Computed tomography of masses of the brachial plexus and contributing nerve roots in dogs.

A retrospective analysis of masses of the brachial plexus and contributing nerve roots in dogs seen at the University of Minnesota over a 17-year period was conducted. The goal of the study was to characterize their computed tomographic (CT) appearance and determine the minimum mass size confidently detectable. Twenty-four cases with a recorded diagnosis of brachial plexus or caudal cervical nerve root mass were found, wherein both the medical records and CT images were available for evaluation. These masses were characterized based on the presence or absence of contrast enhancement, margin character, size, extent of local invasion, and presence of vertebral canal or spinal cord involvement. Within the limits of this study, and the available histopathology, there appeared to be no clinically exploitable relationship between the tomographic appearance and the histologic interpretation. Twenty masses were noted to contrast enhance, typically with rim enhancement and a hypodense center. Only two dogs had a palpable axillary mass on physical examination. As measured, based on the largest dimension within a single slice, detectable masses ranged from 1.0 to 6.5 cm.