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1.  Parental Preferences and Goals Regarding ADHD Treatment 
Pediatrics  2013;132(4):692-702.
To describe the association between parents’ attention-deficit/hyperactivity disorder (ADHD) treatment preferences and goals and treatment initiation.
Parents/guardians of children aged 6 to 12 years diagnosed with ADHD in the past 18 months and not currently receiving combined treatment (both medication and behavior therapy [BT]) were recruited from 8 primary care sites and an ADHD treatment center. Parents completed the ADHD Preference and Goal Instrument, a validated measure, and reported treatment receipt at 6 months. Logistic regression was used to analyze the association of baseline preferences and goals with treatment initiation. Using linear regression, we compared the change in preferences and goals over 6 months for children who initiated treatment versus others.
The study included 148 parents/guardians. Baseline medication and BT preference were associated with treatment initiation (odds ratio [OR]: 2.6 [95% confidence interval (CI):1.2–5.5] and 2.2 [95% CI: 1.0–5.1], respectively). The goal of academic achievement was associated with medication initiation (OR: 2.1 [95% CI: 1.3–3.4]) and the goal of behavioral compliance with initiation of BT (OR: 1.6 [95% CI: 1.1–2.4]). At 6 months, parents whose children initiated medication or BT compared with others had decreased academic and behavioral goals, suggesting their goals were attained. However, only those initiating BT had diminished interpersonal relationship goals.
Parental treatment preferences were associated with treatment initiation, and those with distinct goals selected different treatments. Results support the formal measurement of preferences and goals in practice as prioritized in recent national guidelines for ADHD management.
PMCID: PMC3784291  PMID: 23999959
ADHD; shared decision-making
2.  Effectiveness of Decision Support for Families, Clinicians, or Both on HPV Vaccine Receipt 
Pediatrics  2013;131(6):1114-1124.
To improve human papillomavirus (HPV) vaccination rates, we studied the effectiveness of targeting automated decision support to families, clinicians, or both.
Twenty-two primary care practices were cluster-randomized to receive a 3-part clinician-focused intervention (education, electronic health record-based alerts, and audit and feedback) or none. Overall, 22 486 girls aged 11 to 17 years due for HPV vaccine dose 1, 2, or 3 were randomly assigned within each practice to receive family-focused decision support with educational telephone calls. Randomization established 4 groups: family-focused, clinician-focused, combined, and no intervention. We measured decision support effectiveness by final vaccination rates and time to vaccine receipt, standardized for covariates and limited to those having received the previous dose for HPV #2 and 3. The 1-year study began in May 2010.
Final vaccination rates for HPV #1, 2, and 3 were 16%, 65%, and 63% among controls. The combined intervention increased vaccination rates by 9, 8, and 13 percentage points, respectively. The control group achieved 15% vaccination for HPV #1 and 50% vaccination for HPV #2 and 3 after 318, 178, and 215 days. The combined intervention significantly accelerated vaccination by 151, 68, and 93 days. The clinician-focused intervention was more effective than the family-focused intervention for HPV #1, but less effective for HPV #2 and 3.
A clinician-focused intervention was most effective for initiating the HPV vaccination series, whereas a family-focused intervention promoted completion. Decision support directed at both clinicians and families most effectively promotes HPV vaccine series receipt.
PMCID: PMC3666111  PMID: 23650297
decision support systems; electronic records; immunizations
3.  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.
To describe the development and validation of an instrument to measure parents' attention deficit-hyperactivity disorder (ADHD) treatment preferences and goals.
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.
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).
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.
PMCID: PMC3456970  PMID: 22748759
ADHD; Shared Decision Making; Patient Preference; Practice-Based Research
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).
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.
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.
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.
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.  Shared decision making and behavioral impairment: a national study among children with special health care needs 
BMC Pediatrics  2012;12:153.
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).
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.
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.
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.
PMCID: PMC3470977  PMID: 22998626
Children with Special Health Care Needs; Communication; Decision-Making

Results 1-6 (6)