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.
ADHD; shared decision-making
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.
decision support systems; electronic records; immunizations
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.
ADHD; Shared Decision Making; Patient Preference; Practice-Based Research
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.
children with special health care needs; communication; decision-making; health care expenditures
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.
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.
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.
ADHD; asthma; communication; decision-making; telephone care
To characterize patterns of electronic medical record (EMR) use at pediatric primary care acute visits.
Direct observational study of 529 acute visits with 27 experienced pediatric clinician users.
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.
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).
The 12 study practices shared one EMR.
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.
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.
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.
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.
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.
shared decision-making; attention-deficit/hyperactivity disorder
Background: A varicella diagnosis or verification of disease history by any healthcare provider is currently accepted for determining evidence of immunity by the Advisory Committee on Immunization Practices (ACIP).
Objective: To examine the accuracy of medical record (MR) documented varicella history as a measure of varicella-zoster virus (VZV) immunity among unvaccinated individuals born after 1980. We also assessed methods to practically implement ACIP guidelines to verify varicella history using medical records.
Study Design: As part of a larger cross-sectional study conducted at three Philadelphia clinics from 2004–2006, we recruited 536 unvaccinated patients aged 5–19 y (birth years: 1985–2001). Varicella history was obtained from three sources: parent/patient interview, any MR documentation (sick and well visits) and MR documentation of a sick visit for varicella. All participants were tested for VZV IgG. For each source and three age groups (5–9, 10–14, 15–19 y old), positive predictive value (PPV) was calculated. Specificity of varicella history was compared between different sources using McNemar’s Chi-square.
Results: Among participants aged 5–9, 10–14 and 15–19 y the PPV for any MR documentation and sick visit diagnosis were 96% and 100%, 92% and 97%, and 99% and 100%, respectively. The specificity for sick visit documentation was higher than any MR documentation and patient/parent recall among all age groups; however, these differences were only statistically significant when comparing sick visit documentation to parent/patient recall for 10-14 y olds.
Conclusion: Sick visit documentation of varicella in the MR is an accurate predictor of varicella seropositivity and useful for confirming disease history among unvaccinated persons (birth years: 1985–2001). This method is a practical way to verify varicella history using the ACIP guidelines.
varicella; chickenpox; unvaccinated; medical record documentation; immunity
Vaccination coverage is still below the Healthy People 2010 and 2020 goals. Technology use in the US is widespread by patients and providers including text message, email, internet, social media and electronic health records. Health information technology (IT) interventions can facilitate the rapid or real-time identification of children in need of vaccination and provide the foundation for vaccine-oriented parental communication or clinical alerts in a flexible and tailored manner. There has been a small but burgeoning field of work integrating IT into vaccination interventions including reminder/recall using non-traditional methods, clinical decision support for providers in the electronic health record, use of technology to affect work-flow and the use of social media. The aim of this review is to introduce and present current data regarding the effectiveness of a range of technology tools to promote vaccination, describe gaps in the literature and offer insights into future directions for research and intervention.
SMS; clinical decision support; mHealth; technology; vaccine; web 2.0
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).
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.
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.”
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.
Fostering SDM in primary care is consonant with notions of ADHD as distinct from mental health.
Shared decision making; Attention Deficit Hyperactivity Disorder; Disparities
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.
To evaluate the association of late-preterm birth with asthma severity among young children.
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.
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).
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.
late preterm; gestational age; asthma; persistent asthma; health care use
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.
Children with Special Health Care Needs; Communication; Decision-Making
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.
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.
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.
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.
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.
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.
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.
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.
Parent-reported factors provide predictive accuracy for academic achievement.
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.
Pediatrics; Partnership; Mental health