Maria T. Britto

Adolescents with a chronic condition: challenges living, challenges treating

In this review, we aim to focus attention on the interaction between adolescents with chronic conditions and the health systems that support them. At least 12% of adolescents live with a chronic condition. Some conditions are characterised by increasing incidence (eg, diabetes) or improving survival rates (eg, cystic fibrosis), while others are concerning because of differentially poorer outcomes in adolescents in comparison to both children and adults (eg cancer). Growing evidence suggests that young people with chronic conditions are doubly disadvantaged--engaging in risky behaviours to at least similar if not higher rates as healthy peers, while having the potential for greater adverse health outcomes from these behaviours. In addition to efforts at improving survival, in order to improve their life chances, we need to better understand how the social and emotional outcomes of young people with a chronic disease can be improved, and better support young peoples emerging capacity for self-management.

School disconnectedness: identifying adolescents at risk.

Objective. School connectedness, or the feeling of closeness to school personnel and the school environment, decreases the likelihood of health risk behaviors during adolescence. The objective of this study was to identify factors differentiating youth who do and do not feel connected to their schools in an effort to target school-based interventions to those at highest health risk. Methods. The study population consisted of all students attending the 7th through 12th grades of 8 public schools. The students were asked to complete a modified version of the in-school survey designed for the National Longitudinal Study of Adolescent Health (Add Health). The school connectedness score (SCS) was the summation of 5 survey items. Bivariate analyses were used to evaluate the association between SCS and 13 self-reported variables. Stepwise linear regression was conducted to identify the set of factors best predicting connectedness, and logistic regression analysis was performed to identify students with SCS >1 standard deviation below the mean. Results. Of the 3491 students receiving surveys, 1959 (56%) submitted usable surveys. The sample was 47% white and 38% black. Median age was 15. Median grade was 9th. The SCS was normally distributed with a mean of 15.7 and a possible range of 5 to 25. Of the 12 variables associated with connectedness, 7 (gender, race, extracurricular involvement, cigarette use, health status, school nurse visits, and school area) entered the linear regression model. All but gender were significant in the logistic model predicting students with SCS >1 standard deviation below the mean. Conclusions. In our sample, decreasing school connectedness was associated with 4 potentially modifiable factors: declining health status, increasing school nurse visits, cigarette use, and lack of extracurricular involvement. Black race, female gender, and urban schools were also associated with lower SCS. Further work is needed to better understand the link between these variables and school connectedness. If these associations are found in other populations, school health providers could use these markers to target youth in need of assistance.

Cystic fibrosis and transition to adult medical care.

Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.

What is known about parents' treatment decisions? A narrative review of pediatric decision making.

Background. With the increasing complexity of decisions in pediatric medicine, there is a growing need to understand the pediatric decision-making process. Objective. To conduct a narrative review of the current research on parent decision making about pediatric treatments and identify areas in need of further investigation. Methods. Articles presenting original research on parent decision making were identified from MEDLINE (1966–6/2011), using the terms “decision making,” “parent,” and “child.” We included papers focused on treatment decisions but excluded those focused on information disclosure to children, vaccination, and research participation decisions. Results. We found 55 papers describing 52 distinct studies, the majority being descriptive, qualitative studies of the decision-making process, with very limited assessment of decision outcomes. Although parents’ preferences for degree of participation in pediatric decision making vary, most are interested in sharing the decision with the provider. In addition to the provider, parents are influenced in their decision making by changes in their child’s health status, other community members, prior knowledge, and personal factors, such as emotions and faith. Parents struggle to balance these influences as well as to know when to include their child in decision making. Conclusions. Current research demonstrates a diversity of influences on parent decision making and parent decision preferences; however, little is known about decision outcomes or interventions to improve outcomes. Further investigation, using prospective methods, is needed in order to understand how to support parents through the difficult treatment decisions.

Delivering Adolescent Vaccinations in the Medical Home: A New Era?

BACKGROUND. Medical homes are health care settings that offer continuous, comprehensive, accessible primary care; these settings generally involve pediatric and family physician practices or community health centers but can also involve gynecologists or internists. OBJECTIVES. In this article, we review available evidence on the role of the medical home in optimizing adolescent immunization delivery, particularly with respect to health care utilization patterns and barriers to vaccinations in medical homes, and solutions. METHODS. We conducted a systematic review of the existing immunization and adolescent literature and used a Delphi process to solicit opinions from content experts across the United States. RESULTS. Most adolescents across the United States do have a medical home, and many pay a health care visit to their medical home within any given year. Barriers exist in regards to the receipt of adolescent immunizations, and they are related to the adolescent/family, health care provider, and health care system. Although few studies have evaluated adolescent vaccination delivery, many strategies recommended for childhood or adult vaccinations should be effective for adolescent vaccination delivery as well. These strategies include education of health care providers and adolescents/parents; having appropriate health insurance coverage; tracking and reminder/recall of adolescents who need vaccination; practice-level interventions to ensure that needed vaccinations are provided to eligible adolescents at the time of any health care visit; practice-level audits to measure vaccination coverage; and linkages across health care sites to exchange information about needed vaccinations. Medical homes should perform a quality improvement project to improve their delivery of adolescent vaccinations. Because many adolescents use a variety of health care sites, it is critical to effectively transfer vaccination information across health care settings to identify adolescents who are eligible for vaccinations and to encourage receipt of comprehensive preventive. CONCLUSIONS. Medical homes are integral to both the delivery of adolescent immunizations and comprehensive adolescent preventive health care. Many strategies recommended for childhood and adult vaccinations should work for adolescent vaccinations and should be evaluated and implemented if they are successful. By incorporating evidence-based strategies and coordinating effectively with other health care sites used by adolescents, medical homes will be the pivotal settings for the delivery of adolescent vaccinations.

Gender differences in health-related quality of life of adolescents with cystic fibrosis

BackgroundFemale patients with cystic fibrosis (CF) have consistently poorer survival rates than males across all ages. To determine if gender differences exist in health-related quality of life (HRQOL) of adolescent patients with CF, we performed a cross-section analysis of CF patients recruited from 2 medical centers in 2 cities during 1997–2001.MethodsWe used the 87-item child self-report form of the Child Health Questionnaire to measure 12 health domains. Data was also collected on age and forced expiratory volume in 1 second (FEV1). We analyzed data from 98 subjects and performed univariate analyses and linear regression or ordinal logistic regression for multivariable analyses.ResultsThe mean (SD) age was 14.6 (2.5) years; 50 (51.0%) were female; and mean FEV1 was 71.6% (25.6%) of predicted. There were no statistically significant gender differences in age or FEV1. In univariate analyses, females reported significantly poorer HRQOL in 5 of the 12 domains. In multivariable analyses controlling for FEV1 and age, we found that female gender was associated with significantly lower global health (p < 0.05), mental health (p < 0.01), and general health perceptions (p < 0.05) scores.ConclusionFurther research will need to focus on the causes of these differences in HRQOL and on potential interventions to improve HRQOL of adolescent patients with CF.

Usability Testing Finds Problems for Novice Users of Pediatric Portals

OBJECTIVE Patient portals may improve pediatric chronic disease outcomes, but few have been rigorously evaluated for usability by parents. Using scenario-based testing with think-aloud protocols, we evaluated the usability of portals for parents of children with cystic fibrosis, diabetes or arthritis. DESIGN Sixteen parents used a prototype and test data to complete 14 tasks followed by a validated satisfaction questionnaire. Three iterations of the prototype were used. MEASUREMENTS During the usability testing, we measured the time it took participants to complete or give up on each task. Sessions were videotaped and content-analyzed for common themes. Following testing, participants completed the Computer Usability Satisfaction Questionnaire which measured their opinions on the efficiency of the system, its ease of use, and the likeability of the system interface. A 7-point Likert scale was used, with seven indicating the highest possible satisfaction. RESULTS Mean task completion times ranged from 73 (+/- 61) seconds to locate a document to 431 (+/- 286) seconds to graph laboratory results. Tasks such as graphing, location of data, requesting access, and data interpretation were challenging. Satisfaction was greatest for interface pleasantness (5.9 +/- 0.7) and likeability (5.8 +/- 0.6) and lowest for error messages (2.3 +/- 1.2) and clarity of information (4.2 +/- 1.4). Overall mean satisfaction scores improved between iteration one and three. CONCLUSIONS Despite parental involvement and prior heuristic testing, scenario-based testing demonstrated difficulties in navigation, medical language complexity, error recovery, and provider-based organizational schema. While such usability testing can be expensive, the current study demonstrates that it can assist in making healthcare system interfaces for laypersons more user-friendly and potentially more functional for patients and their families.

Physicians' Shared Decision-Making Behaviors in Attention-Deficit/Hyperactivity Disorder Care

OBJECTIVES To describe the amount of shared decision-making (SDM) behavior exhibited during treatment-planning encounters for children newly diagnosed as having attention-deficit/hyperactivity disorder and to explore relationships between participant characteristics and the amount of SDM. DESIGN Prospective cohort study. SETTING Seven community-based primary care pediatric practices in the Cincinnati, Ohio; northern Kentucky; and southeast Indiana regions from October 5, 2009, through August 9, 2010. PARTICIPANTS Ten pediatricians and 26 families with a 6- to 10-year-old child newly diagnosed as having attention-deficit/hyperactivity disorder. OUTCOME MEASURE The amount of SDM behavior exhibited during videorecorded encounters, as coded by 2 independent raters using the validated Observing Patient Involvement (OPTION) scale, which was adapted for use in pediatric settings and produces a score ranging from 0 (no parental involvement) to 100 (maximal parental involvement). RESULTS Treatment decisions focused on initiation of medication treatment. The mean (SD) total OPTION score was 28.5 (11.7). More SDM was observed during encounters involving families with white vs nonwhite children (adjusted mean difference score, 14.9; 95% confidence interval [CI], 10.2-19.6; P < .001), private vs public health insurance coverage (adjusted mean difference score, 15.1; 11.2-19.0; P < .001), mothers with at least some college education vs high school graduate or less (adjusted mean difference score, 12.3; 7.2-17.4; P < .001), and parents who did not screen positive for serious mental illness vs those who did (adjusted mean difference score, 15.0; 11.9-18.1; P < .001). CONCLUSIONS Low levels of SDM were observed. Exploratory analyses identified potential disparities and barriers. Interventions may be needed to foster SDM with all parents, especially those of nonwhite race, of lower socioeconomic status, of lower educational level, and with serious mental illness.

The In Vivo Adherence Intervention For at Risk Adolescents With Asthma: Report of a Randomized Pilot Trial

OBJECTIVE Low-income and minority adolescents are at high risk for poor asthma outcomes, due in part to adherence. We tested acceptability, feasibility, and effect sizes of an adherence intervention for low socioeconomic status (SES) minority youth with moderate- and severe-persistent asthma. Design and Methods Single-site randomized pilot trial: intervention (n = 12; asthma education, motivational interviewing, problem-solving skills training, 1 month cell-phone with tailored text messaging) versus control (n = 14; asthma education; cell-phone without tailored messaging). Calculated effect-sizes of relative change from baseline (1 and 3 months). RESULTS Intervention was judged acceptable and feasible by participants. Participants (12-18 years, mean = 15.1, SD = 1.67) were 76.9% African-American, 80.7% public/no insurance. At 1 and 3 months, asthma symptoms (Cohens ds = 0.40, 0.96) and HRQOL (PedsQL™; Cohens ds = 0.23, 1.25) had clinically meaningful medium to large effect sizes. CONCLUSIONS This intervention appears promising for at-risk youth with moderate- and severe-persistent asthma.

Shared decision-making to improve attention-deficit hyperactivity disorder care

OBJECTIVE To examine the effect of a shared decision-making intervention with parents of children newly diagnosed with attention-deficit/hyperactivity disorder. METHODS Seven pediatricians participated in a pre/post open trial of decision aids for use before and during the office visit to discuss diagnosis and develop a treatment plan. Encounters pre- (n=21, control group) and post-intervention implementation (n=33, intervention group) were compared. We video-recorded encounters and surveyed parents. RESULTS Compared to controls, intervention group parents were more involved in shared decision-making (31.2 vs. 43.8 on OPTION score, p<0.01), more knowledgeable (6.4 vs. 8.1 questions correct, p<0.01), and less conflicted about treatment options (16.2 vs. 10.7 on decisional conflict total score, p=0.06). Visit duration was unchanged (41.0 vs. 41.6min, p=0.75). There were no significant differences in the median number of follow-up visits (0 vs. 1 visits, p=0.08), or the proportion of children with medication titration (62% vs. 76%, p=0.28), or parent-completed behavior rating scale to assess treatment response (24% vs. 39%, p=0.36). CONCLUSIONS Our intervention increased shared decision-making with parents. Parents were better informed about treatment options without increasing visit duration. PRACTICE IMPLICATIONS Interventions are available to prepare parents for visits and enable physicians to elicit parent preferences and involvement in decision-making.