Lori E. Crosby

Family Functioning in the Context of Pediatric Chronic Conditions

Objective: The aims were to describe and compare generic family functioning in children with five different chronic conditions and healthy comparisons, and to examine the relations between family functioning and sociodemographic variables. Methods: A secondary data analysis from six independent studies including 301 children (cystic fibrosis: n = 59; obesity: n = 28; sickle cell disease: n = 44; inflammatory bowel disease: n = 43; epilepsy: n = 70; healthy comparison group: n = 57) was conducted. In each study, parents completed the Family Assessment Device. Results: Across all five chronic conditions, between 13% and 36% of families endorsed levels of functioning in the “unhealthy” range, with the greatest proportions in the following domains: communication, roles, and affective involvement. No significant group (i.e., between all six groups, namely five chronic conditions as well as healthy comparisons) differences were observed on Family Assessment Device scales (model F [35, 1335] = 0.81, p = .79). Older child age, fewer children living in the home, and lower household income were significantly related to poorer family functioning in the areas of communication, roles, affective involvement, and general functioning. Conclusions: Families of children with and without chronic conditions do not differ significantly from each other on generic family functioning. However, risk factors for poor family functioning include older child age, less children in the home, and lower household income. These risk factors combined with data suggesting that a subset of families exhibit “unhealthy functioning” warrants the need for close monitoring of how families function in the context of a pediatric condition.

Parental Angst Making and Revisiting Decisions About Treatment of Attention-Deficit/Hyperactivity Disorder

BACKGROUND: Attention-deficit/hyperactivity disorder (ADHD) is one of the most common neurobehavioral conditions of childhood and adolescence. Despite availability of effective treatment options, initiation of treatment is variable and persistence with therapeutic regimens is poor. OBJECTIVE: We sought to better understand how parents make decisions about treatment for their child or adolescent with ADHD. METHODS: We conducted a qualitative study among parents of children and adolescents; 52 parents participated in 1 of 12 focus groups. Parents answered questions about decision-making, information sharing, and sources of conflict and uncertainty. Sessions were audiotaped and transcribed verbatim. Themes were coded independently by 4 of the investigators, who then agreed on common themes. RESULTS: Parents in our study made decisions about treatment for their child with ADHD in the midst of experiencing a variety of emotions as they witnessed child functional impairments at home and at school. In addition, parents felt stress as a result of their daily efforts to manage their childs struggles. Multiple factors influenced the decision to initiate medication. Subsequently, revisiting the decision to give their child medicine for ADHD was common. Many parents contrasted time on and off medicine to help inform management decisions. Trials stopping medication were almost always parent- or child-initiated. CONCLUSIONS: Decisions about medication use for children and adolescents with ADHD are made and frequently revisited by their parents. Choices are often made under stressful conditions and influenced by a variety of factors. Striking a balance between benefits and concerns is an ongoing process that is often informed by contrasting time on and off medication. Development of strategies to support families across the continuum of decisions faced while managing ADHD is warranted.

How Pediatricians Can Improve Diet and Activity for Overweight Preschoolers: A Qualitative Study of Parental Attitudes

OBJECTIVE This study sought feedback from parents of overweight preschoolers on terms for overweight and treatment strategies pediatricians could use to help parents improve diet and activity for their children. METHODS Twenty-three parents of 21 children aged 2 to 6 years and between the 85th and 94th percentile body mass index participated in focus groups conducted by a pediatrician to assess 1) terms and health risks that motivate parents, 2) barriers that prevent adoption of recommended behaviors, and 3) recommendations for pediatricians on strategies to help parents improve child diet and activity. RESULTS With regard to weight status, parents preferred the terms overweight and obese as long as pediatricians provided rationale for the classification. Parents recommended that pediatricians avoid colloquial terms to describe weight status. With regard to American Academy of Pediatrics recommendations for weight management in overweight preschoolers, parents were reluctant to restrict 100% fruit juice, needed specific strategies to increase vegetable consumption, and said limiting screen time would be difficult, especially when busy or during inclement weather. Despite identification of barriers, parents reported confidence in adopting all recommended behaviors except vegetable intake if given the rationale for the recommendation and strategies for implementation. CONCLUSION Parents recommended that pediatricians speak clearly about weight status, explain rationale for concern, relate that concern to family history, and provide specific advice and treatment recommendations.

Mediators and Moderators of Outcome in the Behavioral Treatment of Childhood Social Phobia

OBJECTIVE The current study examined mediators and moderators of treatment response among children and adolescents (ages 7-17 years) with a primary diagnosis of social phobia. METHOD Participants were 88 youths participating in one of two randomized controlled treatment trials of Social Effectiveness Therapy for Children. Potential mediators included changes in observer-rated social skill and child-reported loneliness after 12 weeks of Social Effectiveness Therapy for Children. Age and depressive symptoms were examined as potential moderators. RESULTS Loneliness scores and social effectiveness during a role-play task predicted changes in social anxiety and overall functioning at posttreatment. Changes in social anxiety were mediated by child-reported loneliness. Outcomes were not moderated by age or depressive symptoms. CONCLUSIONS Findings support the role of loneliness as an important mechanism of change during treatment for childhood social phobia.

Perceived Barriers to Clinic Appointments for Adolescents with Sickle Cell Disease

Purpose The purpose of this study was to examine perceived barriers to clinic attendance and strategies to overcome these barriers for adolescents with sickle cell disease. Materials and Methods This was a 2-phased study, which used focus groups (n=13) and individual semistructured interviews (n=32) with adolescent patients (aged 13 to 21 y) from 3 pediatric sickle cell clinics in the Midwest. Results Adolescents identified competing activities, health status, patient-provider relationships, adverse clinic experiences, and forgetting as barriers to clinic attendance. Calendars/reminders and parent reminders were the most commonly reported strategies to facilitate clinic attendance. Adolescents also reported the need for flexible scheduling and improved patient-provider communication. Discussion Adolescents with sickle cell disease and their families may benefit from ongoing education about the importance of attending routine clinic visits. Adherence to clinic appointments for adolescents may be enhanced by developing interventions to decrease forgetting (eg, phone call reminders or text messaging) and increase patient satisfaction with clinic visits. Scheduling appointments to accommodate busy schedules/scheduling conflicts (eg, late clinic hours), providing teen-friendly clinic environments, and using technology may also facilitate attendance.

In their own words: Adolescent views on ADHD and their evolving role managing medication

OBJECTIVE Up to 90% of adolescents with attention deficit hyperactivity disorder (ADHD) remain functionally impaired, yet less than half continue to take medication. The objective of this study was to gain a detailed understanding of how adolescents with ADHD contribute to medication treatment decisions. METHODS Forty-four adolescents with ADHD aged 13 to 18 years old participated in 1 of 7 focus groups. An experienced facilitator used a semi-structured focus group guide to prompt discussion which was audio-recorded and transcribed verbatim. We coded transcripts using an inductive approach. Thematic saturation was reached after the seventh focus group. RESULTS Adolescents assumed increased responsibility for managing medication as they matured and developed insight into the functional impact of ADHD and medication on their lives. Insights were often formed by contrasting time spent on and off medication. ADHD impacted functioning in the following domains: academics, social interactions and relationships, creativity, and driving skills. Select domains were relevant for some adolescents but not others. Adolescents described different roles that they played in managing medication as well as strategies they used to exert autonomy over medication use. Side effects were common and contributed to negative feelings toward medication. Some adolescents had begun to use medication selectively. Many expressed uncertainty about future use of medication. CONCLUSIONS Adolescents assume an increasing role in managing medication for ADHD. Well-structured and coordinated trials stopping medication and measuring outcomes relevant to adolescents, parents, teachers, doctors, and/or other stakeholders may help ensure a developmentally appropriate transition from family to self-management of ADHD.

Medication adherence among pediatric patients with sickle cell disease: A systematic review

OBJECTIVES: Describe rates of adherence for sickle cell disease (SCD) medications, identify patient and medication characteristics associated with nonadherence, and determine the effect of nonadherence and moderate adherence (defined as taking 60%–80% of doses) on clinical outcomes. METHODS: In February 2012 we systematically searched 6 databases for peer-reviewed articles published after 1940. We identified articles evaluating medication adherence among patients <25 years old with SCD. Two authors reviewed each article to determine whether it should be included. Two authors extracted data, including medication studied, adherence measures used, rates of adherence, and barriers to adherence. RESULTS: Of 24 articles in the final review, 23 focused on 1 medication type: antibiotic prophylaxis (13 articles), iron chelation (5 articles), or hydroxyurea (5 articles). Adherence rates ranged from 16% to 89%; most reported moderate adherence. Medication factors contributed to adherence. For example, prophylactic antibiotic adherence was better with intramuscular than oral administration. Barriers included fear of side effects, incorrect dosing, and forgetting. Nonadherence was associated with more vaso-occlusive crises and hospitalizations. The limited data available on moderate adherence to iron chelation and hydroxyurea indicates some clinical benefit. CONCLUSIONS: Moderate adherence is typical among pediatric patients with SCD. Multicomponent interventions are needed to optimally deliver life-changing medications to these children and should include routine monitoring of adherence, support to prevent mistakes, and education to improve understanding of medication risks and benefits.

Barriers to Treatment Adherence for Pediatric Patients With Sickle Cell Disease and Their Families

This study systematically identified adherence barriers and strategies in 31 adolescents with sickle cell disease (SCD) and 71 caregivers. Qualitative data indicated that forgetting was the primary barrier and caregiver reminders were the primary strategies identified by both caregivers and adolescents. However, adolescents reported significantly more barriers for pain management (p < .01) than their caregivers. Caregivers and adolescents seem to experience similar as well as a few unique barriers and strategies across multiple components of the SCD treatment regimen. Multidisciplinary treatment teams have the opportunity to facilitate dialogue with patients and their families about adherence barriers and strategies.

Applying Quality Improvement Methods to Implement a Measurement System for Chronic Pain-Related Disability

OBJECTIVE This article describes the application of quality improvement methodology to implement a measurement tool for the assessment of functional status in pediatric patients with chronic pain referred for behavioral intervention. METHODS The Functional Disability Inventory (FDI), a validated instrument for assessment of pain-related disability, was chosen as the primary clinical outcome measure. Using improvement science methodology, PDSA (Plan-Do-Study-Act) cycles were run to evaluate: (a) regular FDI administration, (b) two administration methods, (c) regular patient feedback, and (d) documentation methods. RESULTS Within 1 month, psychologists were administering the FDI at least 80% of the time to patients. A high level of reliability using two administration methods (92.8%) was demonstrated. The FDI was feasible to integrate into clinical practice. Modifications to electronic records further enhanced clinician reliability of documentation. CONCLUSIONS Quality improvement methods are an innovative way to make process changes in pediatric psychology settings to dependably gather and document evidence-based patient outcomes.

Integrating Interactive Web-Based Technology to Assess Adherence and Clinical Outcomes in Pediatric Sickle Cell Disease

Research indicates that the quality of the adherence assessment is one of the best predictors for improving clinical outcomes. Newer technologies represent an opportunity for developing high quality standardized assessments to assess clinical outcomes such as patient experience of care but have not been tested systematically in pediatric sickle cell disease (SCD). The goal of the current study was to pilot an interactive web-based tool, the Take-Charge Program, to assess adherence to clinic visits and hydroxyurea (HU), barriers to adherence, solutions to overcome these barriers, and clinical outcomes in 43 patients with SCD age 6–21 years. Results indicate that the web-based tool was successfully integrated into the clinical setting while maintaining high patient satisfaction (>90%). The tool provided data consistent with the medical record, staff report, and/or clinical lab data. Participants reported that forgetting and transportation were major barriers for adherence to both clinic attendance and HU. A greater number of self-reported barriers (P < .01) and older age (P < .05) were associated with poorer clinic attendance and HU adherence. In summary, the tool represents an innovative approach to integrate newer technology to assess adherence and clinical outcomes for pediatric patients with SCD.