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1.  Development of an Instrument to Measure Parents’ Preferences and Goals for the Treatment of Attention Deficit-Hyperactivity Disorder 
Academic pediatrics  2012;12(5):445-455.
Objectives
To describe the development and validation of an instrument to measure parents' attention deficit-hyperactivity disorder (ADHD) treatment preferences and goals.
Methods
Parents of children 6–12 years diagnosed with ADHD in the past 18 months were recruited from 8 primary care sites and an ADHD treatment center (autism excluded). A 16-item medication and 15-item behavior therapy preference scale and a 23-item goal scale, developed following literature review, 90 parent and clinician semi-structured interviews, and input from parent advocates and professional experts, were administered to parents. Parent cognitive interviews confirmed item readability, clarity, content, and response range. We conducted an exploratory factor analysis, assessed internal consistency and test-retest reliability, and construct and concurrent validity.
Results
We recruited 237 parents (mean child age 8.1 years, 51% Black, 59% from primary care, 61% of children medication naive). Factor analyses identified 4 medication preference subscales (treatment acceptability, feasibility, stigma, and adverse effects, Cronbach's α 0.74 to 0.87); three behavior therapy subscales (treatment acceptability, feasibility, and adverse effects, α 0.76 to 0.83); and three goal subscales (academic achievement, behavioral compliance, and interpersonal relationships, α 0.83 to 0.86). The most strongly endorsed goal was academic achievement. The scales demonstrated construct validity, concurrent validity (r= 0.3–0.6) compared to the Treatment Acceptability Questionnaire and Impairment Rating Scale and moderate to excellent test-retest reliability (ICC= 0.7–0.9).
Conclusions
We developed a valid and reliable instrument for measuring preferences and goals for ADHD treatment, which may help clinicians more easily adhere to new national treatment guidelines for ADHD that emphasize shared decision making.
doi:10.1016/j.acap.2012.04.009
PMCID: PMC3456970  PMID: 22748759
ADHD; Shared Decision Making; Patient Preference; Practice-Based Research
3.  Using freelisting to understand shared decision making in ADHD: Parents’ and pediatricians’ perspectives 
Patient education and counseling  2010;84(2):236-244.
Objective
To compare and contrast notions of ADHD among pediatricians and parents of affected children to understand the perspectives they bring to shared decision making (SDM).
Methods
In this freelisting study, 60 parents of children with ADHD and 30 primary care pediatricians listed words reflecting their understanding of (1) Attention Deficit Hyperactivity Disorder (ADHD), (2) getting/offering help for ADHD, (3) talking to doctors/families about ADHD, and (4) “mental health.” Smith’s salience score established terms that were salient and cultural consensus analysis identified variation within subgroups of participants.
Results
Parents’ terms reflected ADHD’s effects on the child and family, while clinicians often mentioned school. Lists suggested differing needs and goals for clinicians and subgroups of parents in SDM: “time” for clinicians, “learning” and “understanding” for non-college educated parents, and “comfort” and “relief” for college educated parents. Neither parents nor clinicians framed ADHD in the same way as “mental health.”
Conclusion
Parents and clinicians, who conceptualize ADHD differently, should negotiate a shared understanding of ADHD as a basis for SDM. Treatment discussions should be tailored to encompass families’ varied emotional and educational needs.
Practice implications
Fostering SDM in primary care is consonant with notions of ADHD as distinct from mental health.
doi:10.1016/j.pec.2010.07.035
PMCID: PMC3551534  PMID: 20797833
Shared decision making; Attention Deficit Hyperactivity Disorder; Disparities
4.  Shared Decision-Making and Health Care Expenditures Among Children With Special Health Care Needs 
Pediatrics  2012;129(1):99-107.
Background And Objectives
To understand the association between shared decision-making (SDM) and health care expenditures and use among children with special health care needs (CSHCN).
Methods
We identified CSHCN <18 years in the 2002–2006 Medical Expenditure Panel Survey by using the CSHCN Screener. Outcomes included health care expenditures (total, out-of-pocket, office-based, inpatient, emergency department [ED], and prescription) and utilization (hospitalization, ED and office visit, and prescription rates). The main exposure was the pattern of SDM over the 2 study years (increasing, decreasing, or unchanged high or low). We assessed the impact of these patterns on the change in expenditures and utilization over the 2 study years.
Results
Among 2858 subjects representing 12 million CSHCN, 15.9% had increasing, 15.2% decreasing, 51.9% unchanged high, and 17.0% unchanged low SDM. At baseline, mean per child total expenditures were $2131. Over the 2 study years, increasing SDM was associated with a decrease of $339 (95% confidence interval: $21, $660) in total health care costs. Rates of hospitalization and ED visits declined by 4.0 (0.1, 7.9) and 11.3 (4.3, 18.3) per 100 CSHCN, and office visits by 1.2 (0.3, 2.0) per child with increasing SDM. Relative to decreasing SDM, increasing SDM was associated with significantly lower total and out-of-pocket costs, and fewer office visits.
Conclusions
We found that increasing SDM was associated with decreased utilization and expenditures for CSHCN. Prospective study is warranted to confirm if fostering SDM reduces the costs of caring for CSHCN for the health system and families.
doi:10.1542/peds.2011-1352
PMCID: PMC3255469  PMID: 22184653
children with special health care needs; communication; decision-making; health care expenditures
5.  The Implementation and Acceptability of an HPV Vaccination Decision Support System Directed at Both Clinicians and Families 
We developed an electronic medical record (EMR)-based HPV vaccine decision support intervention targeting clinicians, (immunization alerts, education, and feedback) and families (phone reminders and referral to an educational website). Through telephone surveys completed by 162 parents of adolescent girls, we assessed the acceptability of the family-focused intervention and its effect on information-seeking behavior, communication, and HPV vaccine decision-making. The intervention was acceptable to parents and 46% remembered receiving the reminder call. Parents reported that the call prompted them to seek out information regarding the HPV vaccine, discuss the vaccine with friends and family, and reach a decision. Parents whose adolescent girls attended practices receiving the clinician-focused intervention were more likely to report that their clinician discussed the HPV vaccine at preventive visits. The results of this study demonstrate the acceptability and potential impact on clinical care of a comprehensive decision support system directed at both clinicians and families.
PMCID: PMC3540460  PMID: 23304334
6.  Association of Late-Preterm Birth With Asthma in Young Children: Practice-Based Study 
Pediatrics  2011;128(4):e830-e838.
OBJECTIVE:
To evaluate the association of late-preterm birth with asthma severity among young children.
METHODS:
A retrospective cohort study was performed with electronic health record data from 31 practices affiliated with an academic medical center. Participants included children born in 2007 at 34 to 42 weeks of gestation and monitored from birth to 18 months. We used multivariate logistic or Poisson models to assess the impact of late-preterm (34–36 weeks) and low-normal (37–38 weeks) compared with term (39–42 weeks) gestation on diagnoses of asthma and persistent asthma, inhaled corticosteroid use, and numbers of acute respiratory visits.
RESULTS:
Our population included 7925 infants (7% late-preterm and 21% low-normal gestation). Overall, 8.3% had been diagnosed with asthma by 18 months. Compared with term gestation, late-preterm gestation was associated with significant increases in persistent asthma diagnoses (adjusted odds ratio [aOR]: 1.68), inhaled corticosteroid use (aOR: 1.66), and numbers of acute respiratory visits (incidence rate ratio: 1.44). Low-normal gestation was associated with increases in asthma diagnoses (aOR: 1.34) and inhaled corticosteroid use (aOR: 1.39).
CONCLUSION:
Birth at late-preterm and low-normal gestational ages might be an important risk factor for the development of asthma and for increased health service use in early childhood.
doi:10.1542/peds.2011-0809
PMCID: PMC3387906  PMID: 21911345
late preterm; gestational age; asthma; persistent asthma; health care use
7.  Shared decision making and behavioral impairment: a national study among children with special health care needs 
BMC Pediatrics  2012;12:153.
Background
The Institute of Medicine has prioritized shared decision making (SDM), yet little is known about the impact of SDM over time on behavioral outcomes for children. This study examined the longitudinal association of SDM with behavioral impairment among children with special health care needs (CSHCN).
Method
CSHCN aged 5-17 years in the 2002-2006 Medical Expenditure Panel Survey were followed for 2 years. The validated Columbia Impairment Scale measured impairment. SDM was measured with 7 items addressing the 4 components of SDM. The main exposures were (1) the mean level of SDM across the 2 study years and (2) the change in SDM over the 2 years. Using linear regression, we measured the association of SDM and behavioral impairment.
Results
Among 2,454 subjects representing 10.2 million CSHCN, SDM increased among 37% of the population, decreased among 36% and remained unchanged among 27%. For CSHCN impaired at baseline, the change in SDM was significant with each 1-point increase in SDM over time associated with a 2-point decrease in impairment (95% CI: 0.5, 3.4), whereas the mean level of SDM was not associated with impairment. In contrast, among those below the impairment threshold, the mean level of SDM was significant with each one point increase in the mean level of SDM associated with a 1.1-point decrease in impairment (0.4, 1.7), but the change was not associated with impairment.
Conclusion
Although the change in SDM may be more important for children with behavioral impairment and the mean level over time for those below the impairment threshold, results suggest that both the change in SDM and the mean level may impact behavioral health for CSHCN.
doi:10.1186/1471-2431-12-153
PMCID: PMC3470977  PMID: 22998626
Children with Special Health Care Needs; Communication; Decision-Making
8.  The promise of shared decision-making in paediatrics 
Acta Paediatrica (Oslo, Norway : 1992)  2010;99(10):1464-1466.
doi:10.1111/j.1651-2227.2010.01978.x
PMCID: PMC3401948  PMID: 21050268
9.  Shared Decision-Making in Pediatrics: A National Perspective 
Pediatrics  2010;126(2):306-314.
OBJECTIVES
To identify patterns of shared decision-making (SDM) among a nationally representative sample of US children with attention-deficit/hyperactivity disorder (ADHD) or asthma and determine if demographics, health status, or access to care are associated with SDM.
PATIENTS AND METHODS
We performed a cross-sectional study of the 2002–2006 Medical Expenditure Panel Survey, which represents 2 million children with ADHD and 4 million children with asthma. The outcome, high SDM, was defined by using latent class models based on 7 Medical Expenditure Panel Survey items addressing aspects of SDM. We entered factors potentially associated with SDM into logistic regression models with high SDM as the outcome. Marginal standardization then described the standardized proportion of children’s households with high SDM for each factor.
RESULTS
For both ADHD and asthma, 65% of children’s households had high SDM. Those who reported poor general health for their children were 13% less likely to have high SDM for ADHD (64 vs 77%) and 8% less likely for asthma (62 vs 70%) when adjusting for other factors. Results for behavioral impairment were similar. Respondent demographic characteristics were not associated with SDM. Those with difficulty contacting their clinician by telephone were 26% (ADHD: 55 vs 81%) and 29% (asthma: 48 vs 77%) less likely to have high SDM than those without difficulty.
CONCLUSIONS
These findings indicate that households of children who report greater impairment or difficulty contacting their clinician by telephone are less likely to fully participate in SDM. Future research should examine how strategies to foster ongoing communication between families and clinicians affect SDM.
doi:10.1542/peds.2010-0526
PMCID: PMC3373306  PMID: 20624804
ADHD; asthma; communication; decision-making; telephone care
10.  Designing Computerized Decision Support That Works for Clinicians and Families 
Evidence-based decision-making is central to the practice of pediatrics. Clinical trials and other biomedical research provide a foundation for this process, and practice guidelines, drawing from their results, inform the optimal management of an increasing number of childhood health problems. However, many clinicians fail to adhere to guidelines. Clinical decision support delivered using health information technology, often in the form of electronic health records, provides a tool to deliver evidence-based information to the point of care and has the potential to overcome barriers to evidence-based practice. An increasing literature now informs how these systems should be designed and implemented to most effectively improve outcomes in pediatrics. Through the examples of computerized physician order entry, as well as the impact of alerts at the point of care on immunization rates, the delivery of evidence-based asthma care, and the follow-up of children with attention deficit hyperactivity disorder, the following review addresses strategies for success in using these tools. The following review argues that, as decision support evolves, the clinician should no longer be the sole target of information and alerts. Through the Internet and other technologies, families are increasingly seeking health information and gathering input to guide health decisions. By enlisting clinical decision support systems to deliver evidence-based information to both clinicians and families, help families express their preferences and goals, and connect families to the medical home, clinical decision support may ultimately be most effective in improving outcomes.
doi:10.1016/j.cppeds.2010.10.006
PMCID: PMC3373310  PMID: 21315295
11.  Electronic medical record use in pediatric primary care 
Objectives
To characterize patterns of electronic medical record (EMR) use at pediatric primary care acute visits.
Design
Direct observational study of 529 acute visits with 27 experienced pediatric clinician users.
Measurements
For each 20 s interval and at each stage of the visit according to the Davis Observation Code, we recorded whether the physician was communicating with the family only, using the computer while communicating, or using the computer without communication. Regression models assessed the impact of clinician, patient and visit characteristics on overall visit length, time spent interacting with families, and time spent using the computer while interacting.
Results
The mean overall visit length was 11:30 (min:sec) with 9:06 spent in the exam room. Clinicians used the EMR during 27% of exam room time and at all stages of the visit (interacting, chatting, and building rapport; history taking; formulation of the diagnosis and treatment plan; and discussing prevention) except the physical exam. Communication with the family accompanied 70% of EMR use. In regression models, computer documentation outside the exam room was associated with visits that were 11% longer (p=0.001), and female clinicians spent more time using the computer while communicating (p=0.003).
Limitations
The 12 study practices shared one EMR.
Conclusions
Among pediatric clinicians with EMR experience, conversation accompanies most EMR use. Our results suggest that efforts to improve EMR usability and clinician EMR training should focus on use in the context of doctor–patient communication. Further study of the impact of documentation inside versus outside the exam room on productivity is warranted.
doi:10.1136/jamia.2010.004135
PMCID: PMC3005866  PMID: 21134975
12.  Contrasting Parents' and Pediatricians' Perspectives on Shared Decision-Making in ADHD 
Pediatrics  2010;127(1):e188-e196.
OBJECTIVE:
The goal was to compare how parents and clinicians understand shared decision-making (SDM) in attention-deficit/hyperactivity disorder (ADHD), a prototype for SDM in pediatrics.
METHODS:
We conducted semi-structured interviews with 60 parents of children 6 to 12 years of age with ADHD (50% black and 43% college educated) and 30 primary care clinicians with varying experience. Open-ended interviews explored how pediatric clinicians and parents understood SDM in ADHD. Interviews were taped, transcribed, and then coded. Data were analyzed by using a modified grounded theory approach.
RESULTS:
Parents and clinicians both viewed SDM favorably. However, parents described SDM as a partnership between equals, with physicians providing medical expertise and the family contributing in-depth knowledge of the child. In contrast, clinicians understood SDM as a means to encourage families to accept clinicians' preferred treatment. These findings affected care because parents mistrusted clinicians whose presentation they perceived as biased. Both groups discussed how real-world barriers limit the consideration of evidence-based options, and they emphasized the importance of engaging professionals, family members, and/or friends in SDM. Although primary themes did not differ according to race, white parents more commonly received support from medical professionals in their social networks.
CONCLUSIONS:
Despite national guidelines prioritizing SDM in ADHD, challenges to implementing the process persist. Results suggest that, to support SDM in ADHD, modifications are needed at the practice and policy levels, including clinician training, incorporation of decision aids and improved strategies to facilitate communication, and efforts to ensure that evidence-based treatment is accessible.
doi:10.1542/peds.2010-1510
PMCID: PMC3010085  PMID: 21172996
shared decision-making; attention-deficit/hyperactivity disorder
13.  HPV vaccine decision making in pediatric primary care: a semi-structured interview study 
BMC Pediatrics  2011;11:74.
Background
Despite national recommendations, as of 2009 human papillomavirus (HPV) vaccination rates were low with < 30% of adolescent girls fully vaccinated. Research on barriers to vaccination has focused separately on parents, adolescents, or clinicians and not on the decision making process among all participants at the point of care. By incorporating three distinct perspectives, we sought to generate hypotheses to inform interventions to increase vaccine receipt.
Methods
Between March and June, 2010, we conducted qualitative interviews with 20 adolescent-mother-clinician triads (60 individual interviews) directly after a preventive visit with the initial HPV vaccine due. Interviews followed a guide based on published HPV literature, involved 9 practices, and continued until saturation of the primary themes was achieved. Purposive sampling balanced adolescent ages and practice type (urban resident teaching versus non-teaching). Using a modified grounded theory approach, we analyzed data with NVivo8 software both within and across triads to generate primary themes.
Results
The study population was comprised of 20 mothers (12 Black, 9 < high school diploma), 20 adolescents (ten 11-12 years old), and 20 clinicians (16 female). Nine adolescents received the HPV vaccine at the visit, eight of whom were African American. Among the 11 not vaccinated, all either concurrently received or were already up-to-date on Tdap and MCV4. We did not observe systematic patterns of vaccine acceptance or refusal based on adolescent age or years of clinician experience. We identified 3 themes: (1) Parents delayed, rather than refused vaccination, and when they expressed reluctance, clinicians were hesitant to engage them in discussion. (2) Clinicians used one of two strategies to present the HPV vaccine, either presenting it as a routine vaccine with no additional information or presenting it as optional and highlighting risks and benefits. (3) Teens considered themselves passive participants in decision making, even when parents and clinicians reported including them in the process.
Conclusions
Programs to improve HPV vaccine delivery in primary care should focus on promoting effective parent-clinician communication. Research is needed to evaluate strategies to help clinicians engage reluctant parents and passive teens in discussion and measure the impact of distinct clinician decision making approaches on HPV vaccine delivery.
doi:10.1186/1471-2431-11-74
PMCID: PMC3175168  PMID: 21878128
14.  Early identification of young children at risk for poor academic achievement: preliminary development of a parent-report prediction tool 
Background
Early school success is clearly related to later health. A prediction index that uses parent report to assess children's risk for poor academic achievement could potentially direct targeted service delivery to improve child outcomes.
Methods
We obtained risk factors through literature review and used the National Longitudinal Survey of Youth 1979 Child Files to examine the predictive associations of these factors with academic achievement scores.
Results
Twenty predictors were identified including four strong predictors (maternal education, child gender, family income, and low birth weight). Significantly, 12 predictors explained 17-24% of score variance.
Conclusions
Parent-reported factors provide predictive accuracy for academic achievement.
doi:10.1186/1472-6963-11-197
PMCID: PMC3173303  PMID: 21851586
15.  Partnership in the Treatment of Childhood Mental Health Problems: A Pediatric Perspective 
School mental health  2010;2(2):93-101.
Pediatricians understand their role as promoting both the physical and mental health of children from birth until adulthood. Within the context of this long-term relationship, parents approach clinicians to address a full range of behavioral concerns ranging from variations of normal development to major mental illness. In this commentary that builds upon the earlier manuscripts in this collection, we explore the pediatrician’s role in mental health care through the example of attention-deficit hyperactivity disorder (ADHD). ADHD is an ideal prototype for the exploration of partnership in mental health care because ADHD is the most common neurobehavioral disorder in childhood, it is commonly treated in primary care settings, multiple evidence-based treatments exist, personal values strongly influence the acceptability of treatment, treatment adherence is often poor, and effective treatment relies on the collaboration of pediatricians with families, schools, and the mental health system. Through the use of the Chronic Care Model for Child Health that emphasizes the importance of optimizing and coordinating systems of care for effective partnership, the following manuscript reviews the challenges and opportunities for pediatricians partnering with families and schools to address mental health problems. Strategies highlighted in the preceding papers are discussed within the context of this model.
doi:10.1007/s12310-010-9037-2
PMCID: PMC2915470  PMID: 20694177
Pediatrics; Partnership; Mental health

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