12 results on '"Abigail Breck"'
Search Results
2. HPV Vaccinations at Acute Visits and Subsequent Adolescent Preventive Visits
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Alexander G, Fiks, Chloe, Hannan, Russell, Localio, Mary Kate, Kelly, Alisa J, Stephens-Shields, Robert W, Grundmeier, Laura P, Shone, Jennifer, Steffes, Abigail, Breck, Margaret, Wright, Cynthia M, Rand, Christina, Albertin, Sharon G, Humiston, Greta, McFarland, Dianna E, Abney, and Peter G, Szilagyi
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Adolescent ,Primary Health Care ,Papillomavirus Infections ,Vaccination ,Pediatrics, Perinatology and Child Health ,Humans ,Papillomavirus Vaccines - Published
- 2022
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3. Perspectives on Maternal Vaccination from Obstetrical Clinicians: A Qualitative Multi-site Study
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Sharon G, Humiston, Peter G, Szilagyi, Robin G, Bender, Abigail, Breck, Christina S, Albertin, Devin, Clark, and Cynthia M, Rand
- Abstract
Despite the seriousness of influenza and pertussis, availability of safe and effective vaccines against them, and long-standing maternal vaccination recommendations, US maternal influenza and Tdap vaccination rates have been low. To increase vaccination rates in obstetric offices, it is important to understand clinician perspectives and office processes. We conducted in-depth interviews with nurses and providers on these topics.Interviewees worked in obstetric offices in one-of-four participating health systems in NY and CA. We audio-recorded and transcribed 20-30-min interviews. We used predetermined categories to code interviews with Dedoose, then iteratively refined codes and identified themes.We conducted 20 interviews between 4/2020 and 9/2020: 13 providers (physician or nurse midwife) (5 NY, 8 CA); 7 office nurses (6 NY, 1 CA). In almost all offices, patient refusal of influenza vaccine was considered the major vaccination barrier; Tdap was often deferred by patients until post-delivery. Nurse-only visits for either vaccine were rare. Vaccination outside the office was uncommon; few offices systematically documented vaccines given elsewhere in a retrievable manner. Participants emphasized patient education as key to prenatal care, but the number of topics left little time for immunizations. Few interviewees could identify an office "immunization champion," knew their office vaccination rates, or had participated in vaccination quality improvement. Several interviewees indicated that they or another provider were good at persuading hesitant patients, but their method had not been shared with other clinicians.Multiple practical barriers and maternal vaccine hesitancy limit maternal vaccination. Quality improvement strategies are needed.
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- 2022
4. A validated modification of the vaccine hesitancy scale for childhood, influenza and HPV vaccines
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Alison W. Saville, Peter G. Szilagyi, Dennis Gurfinkel, Christina Albertin, Laura Helmkamp, Abigail Breck, Allison Kempe, Gregory D. Zimet, and Sitaram Vangala
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Parents ,Health Knowledge, Attitudes, Practice ,medicine.medical_specialty ,Adolescent ,Influenza vaccine ,HPV vaccines ,Disease ,03 medical and health sciences ,0302 clinical medicine ,030225 pediatrics ,Influenza, Human ,medicine ,Humans ,Papillomavirus Vaccines ,030212 general & internal medicine ,Child ,General Veterinary ,General Immunology and Microbiology ,business.industry ,Vaccination ,Public Health, Environmental and Occupational Health ,Patient Acceptance of Health Care ,Confirmatory factor analysis ,Infectious Diseases ,Influenza Vaccines ,Family medicine ,Scale (social sciences) ,Molecular Medicine ,business - Abstract
INTRODUCTION Vaccine hesitancy contributes to outbreaks of preventable disease worldwide. The Vaccine Hesitancy Scale (VHS), developed by the international WHO SAGE Working Group, has been validated previously for measuring hesitancy towards childhood vaccines; some psychometric properties were suboptimal. METHODS We collected data using large, nationally-representative samples of parents in the U.S. We adapted the VHS items, and additional hesitancy items, to assess hesitancy towards influenza and HPV vaccines in addition to routine childhood vaccines. We then used exploratory and confirmatory factor analysis to identify latent constructs and create modified scales for childhood (VHS-child), influenza (VHS-flu) and HPV (VHS-HPV) vaccines with improved psychometric properties. Finally, we compared hesitancy scores on the VHS-child, VHS-flu, and VHS-HPV, to self-reported receipt of each vaccine category, and compared subscale scores to assess whether drivers of hesitancy differed by vaccine category. RESULTS 2052 parents of children
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- 2021
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5. Prevalence and characteristics of HPV vaccine hesitancy among parents of adolescents across the US
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Christina Albertin, Peter G. Szilagyi, Abigail Breck, Sitaram Vangala, Cynthia M. Rand, Alison W. Saville, Sharon G. Humiston, Dennis Gurfinkel, Allison Kempe, Rebecca Valderrama, Gregory D. Zimet, Laura Helmkamp, and John D. Rice
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Parents ,Health Knowledge, Attitudes, Practice ,medicine.medical_specialty ,Multivariate analysis ,Adolescent ,Article ,03 medical and health sciences ,0302 clinical medicine ,Vaccination Refusal ,030225 pediatrics ,Prevalence ,Humans ,Medicine ,Papillomavirus Vaccines ,030212 general & internal medicine ,General Veterinary ,General Immunology and Microbiology ,business.industry ,Papillomavirus Infections ,Vaccination ,Public Health, Environmental and Occupational Health ,Patient Acceptance of Health Care ,Infectious Diseases ,Family medicine ,Hispanic ethnicity ,Vaccine refusal ,Molecular Medicine ,business - Abstract
Background While many clinicians encounter parents or adolescents who refuse HPV vaccine, little is known about the prevalence of hesitancy for HPV vaccine nationally or its association with vaccination. Methods In April 2019, we surveyed families with adolescents 11–17 years using a national online panel (Knowledge Panel®) as the sampling frame. We assessed the prevalence of HPV vaccine hesitancy with the validated 9-item Vaccine Hesitancy Scale (VHS). We used multivariate analyses to assess demographic factors associated with HPV vaccine hesitancy. We also assessed practical barriers to receipt of HPV vaccine and the relationship between barriers and hesitancy. Finally, we evaluated the association between both HPV vaccine hesitancy and practical barriers on HPV vaccine receipt or refusal. Results 2,177 parents out of 4,185 sampled (52%) completed the survey, 2,020 qualified (lived with adolescent). Using a VHS cut-off score > 3 out of 5 points, 23% of US parents were hesitant about HPV vaccine. Hesitancy was lower among those with Hispanic ethnicity. At least one out of five parents disagreed that the HPV vaccine is beneficial for their adolescent, that the vaccine is effective, protects against HPV-related cancers, or that they followed their adolescent’s health-care provider’s recommendation about the vaccine. Many were concerned about vaccine side effects and the novelty of the vaccine. Adolescents living with vaccine-hesitant parents were less than one-third as likely to have received the vaccine (RR = 0.29, 95% CI 0.24, 0.35) or completed the vaccine series (RR = 0.29, 95% CI 0.23, 0.36), and were 6-fold more likely to have refused the vaccine because of parental vaccine-related concerns (RR = 6.09, 95% CI = 5.26, 7.04). Most practical barriers were independently associated with vaccine receipt but not with vaccine refusal. Conclusions HPV vaccine hesitancy is common nationally and strongly related to both under-vaccination and vaccine refusal.
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- 2020
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6. Missed opportunities for human papillomavirus vaccination at office visits during which influenza vaccine was administered: An AAP pediatric research in office settings (PROS) national primary care research network study
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Laura P. Shone, Alisa J. Stephens-Shields, Greta McFarland, Peter G. Szilagyi, Alexander G. Fiks, Sharon G. Humiston, Robert W. Grundmeier, Jennifer Steffes, Mary Kate Kelly, Christina Albertin, Cynthia M. Rand, Margaret Wright, Dianna E. Abney, Abigail Breck, and Russell Localio
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medicine.medical_specialty ,Office Visits ,Influenza vaccine ,Office visits ,Primary care ,Alphapapillomavirus ,Health records ,Article ,03 medical and health sciences ,0302 clinical medicine ,030225 pediatrics ,medicine ,Humans ,Papillomavirus Vaccines ,030212 general & internal medicine ,Child ,Primary Health Care ,General Veterinary ,General Immunology and Microbiology ,business.industry ,Pediatric research ,Papillomavirus Infections ,Vaccination ,Public Health, Environmental and Occupational Health ,virus diseases ,Hpv vaccination ,female genital diseases and pregnancy complications ,Human papillomavirus vaccination ,Infectious Diseases ,Influenza Vaccines ,Family medicine ,Molecular Medicine ,business - Abstract
Introduction Little is known about missed opportunities (MOs) for HPV vaccination during primary care visits at which influenza vaccination is delivered. Methods We extracted electronic health records for HPV vaccine-eligible 11-to-17-year-olds. We assessed the proportion of visits during which an influenza vaccine was given and an HPV vaccine was due, but not given (i.e., MOs). Results Of 56,135 eligible visits, 57.5% represented MOs for HPV vaccination. MOs were more common at visits where an initial versus subsequent HPV vaccine dose was due (68.6% vs. 31.3%) and for acute/chronic and nurse-only visits compared to preventive visits (74.0% and 80.2% vs. 36.7%). In a multivariable model, MOs were more likely for the initial HPV dose and for non-preventive visits, but did not vary by patient sex/age. Conclusions HPV vaccine MOs were common during visits where influenza vaccine was administered. Increasing simultaneous administration of HPV and influenza vaccines could increase HPV vaccine coverage.
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- 2020
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7. Supporting and sustaining centralized reminder/recall for immunizations: Qualitative insights from stakeholders
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Rebecca Valderrama, Alison W. Saville, Christina Albertin, Allison Kempe, Peter G. Szilagyi, Abigail Breck, Dennis Gurfinkel, and Michael P. Fisher
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medicine.medical_specialty ,Reminder Systems ,Best practice ,Decision Making ,030231 tropical medicine ,Immunization registry ,Public-Private Sector Partnerships ,Article ,03 medical and health sciences ,0302 clinical medicine ,Telephone number ,Information system ,medicine ,Humans ,Registries ,030212 general & internal medicine ,General Veterinary ,General Immunology and Microbiology ,Immunization Programs ,business.industry ,Public health ,Vaccination ,Public Health, Environmental and Occupational Health ,Stakeholder ,Public relations ,Shared resource ,Infectious Diseases ,Data quality ,Molecular Medicine ,Immunization ,Business - Abstract
Centralized reminder/recall (C-R/R) is an evidence-based strategy for increasing vaccination rates that uses a population-level database such as a state immunization information system (IIS) to send notifications across large geographic areas. IISs are usually based in state public health departments, which could initiate C-R/R. While C-R/R is a promising strategy, the factors influencing its initiation and sustainment are not clear. Utilizing qualitative content analysis methodology and interviews with key stakeholders involved in or knowledgeable about C-R/R, we examined the characteristics of these initiatives and factors influencing their success. We identified and spoke with managers and senior leaders across IISs, health plans, health systems, pharmaceutical companies, and advocacy organizations and focused especially on C-R/R activities within IISs. Several considerations were determined important to C-R/R success: decision-making, stakeholder buy-in, partnerships, funding, data and technology, evaluation, and message content. Salient barriers were costs and lack of funding, poor contact data quality (i.e. telephone number, home address), and messaging that is either overly broad or too specific. Pertinent facilitators of C-R/R included notifying health providers in advance of an initiative, conducting a rigorous post-reminder/recall evaluation, and engaging a range of partners. Partnerships were important to stakeholders for multiple reasons including technical assistance, resource sharing, and sharing of best practices. Overall, our results illustrate the many opportunities to advance C-R/R through further collaboration within and across public health departments and potentially via public-private partnerships.
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- 2019
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8. Centralized Reminder/Recall for Human Papillomavirus Vaccination: Findings From Two States—A Randomized Clinical Trial
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Allison Kempe, Brenda L. Beaty, Abigail Breck, Chi-Hong Tseng, Shivani Arora, Christina Albertin, Sitaram Vangala, Rebecca Valderrama, John D. Rice, Dennis Gurfinkel, Cynthia M. Rand, Heather Roth, Xinkai Zhou, Jonathan D. Campbell, Peter G. Szilagyi, and Sharon G. Humiston
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Pediatrics ,medicine.medical_specialty ,Adolescent ,Reminder Systems ,education ,Primary care ,Alphapapillomavirus ,Article ,law.invention ,03 medical and health sciences ,Childhood immunization ,0302 clinical medicine ,Randomized controlled trial ,law ,030225 pediatrics ,Medicine ,Humans ,030212 general & internal medicine ,Papillomavirus Vaccines ,Human papillomavirus ,Child ,Reminder recall ,business.industry ,Papillomavirus Infections ,Vaccination ,Public Health, Environmental and Occupational Health ,Hpv vaccination ,Human papillomavirus vaccination ,Psychiatry and Mental health ,Pediatrics, Perinatology and Child Health ,Immunization ,business - Abstract
Purpose Centralized reminder/recall (C-R/R) using Immunization Information Systems has been effective in increasing childhood immunization rates. Previously, C-R/R using autodialer for human papillomavirus (HPV) vaccine did not raise rates. We assessed C-R/R for HPV vaccine using other modalities and focused on younger adolescents. Methods We conducted a three-arm pragmatic RCT in randomly sampled primary care practices in Colorado (n = 88) and New York (n = 136), proportionate to where adolescents received care. We randomized, within practices, adolescents aged 11-14 years who had not completed the HPV vaccination series to receive C-R/R using different modalities (Colorado: autodialer, mail, or control; New York: autodialer, text, or control). Up to two reminders were sent in intervention arms for each dose needed between 2/2017 and 12/2018. Results In Colorado, no significant differences were found for series initiation (31.3% control, 31.1% autodial, 31.8% mail), with slight improvement for series completion in the autodialer arm (29.7% control, 31.1% autodialer, p = .04) but not the mail arm (30.9%, p = .06). No significant differences were found in New York for series initiation (24.1% for all arms) or completion (17.1% control, 16.9% autodial, 17.9% text). Adjusted analyses showed higher completion rates for the autodialer arm in Colorado but not for other arms. In Colorado, C-R/R reduced time to series completion by around 2 months. Cost per adolescent was $1.81 for mail; under $.40 for all other modalities. Conclusions C-R/R has less benefit for raising HPV vaccination rates than other studies have noted for childhood immunizations, although it may quicken series completion at little cost.
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- 2021
9. Parental Hesitancy About Routine Childhood and Influenza Vaccinations: A National Survey
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L. Miriam Dickinson, Abigail Breck, Peter G. Szilagyi, Gregory D. Zimet, Allison Kempe, Laura Helmkamp, Sitaram Vangala, Alison W. Saville, Christina Albertin, Sharon G. Humiston, and Cindy Rand
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Adult ,Parents ,medicine.medical_specialty ,Adolescent ,Influenza vaccine ,Influenza vaccinations ,World health ,Young Adult ,03 medical and health sciences ,0302 clinical medicine ,030225 pediatrics ,Influenza, Human ,Global health ,Humans ,Medicine ,Young adult ,Child ,National data ,Response rate (survey) ,business.industry ,Vaccination ,Infant ,Middle Aged ,Anti-Vaccination Movement ,United States ,Influenza Vaccines ,Child, Preschool ,Family medicine ,Pediatrics, Perinatology and Child Health ,business ,Attitude to Health - Abstract
BACKGROUND AND OBJECTIVES: The World Health Organization has designated vaccine hesitancy as 1 of the 10 leading threats to global health, yet there is limited current national data on prevalence of hesitancy among US parents. Among a nationally representative sample of US parents, we aimed to (1) assess and compare prevalence of hesitancy and factors driving hesitancy for routine childhood and influenza vaccination and (2) examine associations between sociodemographic characteristics and hesitancy for routine childhood or influenza vaccination. METHODS: In February 2019, we surveyed families with children using the largest online panel generating representative US samples. After weighting, we assessed hesitancy using a modified 5-point Vaccine Hesitancy Scale and labeled parents as hesitant if they scored >3. RESULTS: A total of 2176 of 4445 parents sampled completed the survey (response rate 49%). Hesitancy prevalence was 6.1% for routine childhood and 25.8% for influenza vaccines; 12% strongly and 27% somewhat agreed they had concerns about serious side effects of both routine childhood and influenza vaccines. A total of 70% strongly agreed that routine childhood vaccines are effective versus 26% for influenza vaccine (P < .001). In multivariable models, an educational level lower than a bachelor’s degree and household income CONCLUSIONS: Almost 1 in 15 US parents are hesitant about routine childhood vaccines, whereas >1 in 4 are hesitant about influenza vaccine. Furthermore, 1 in 8 parents are concerned about vaccine safety for both routine childhood and influenza vaccines, and only 1 in 4 believe influenza vaccine is effective. Vaccine hesitancy, particularly for influenza vaccine, is prevalent in the United States.
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- 2020
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10. Effect of Training Pediatric Clinicians in Human Papillomavirus Communication Strategies on Human Papillomavirus Vaccination Rates
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Abigail Breck, Christina Albertin, Greta McFarland, Gerald F. Kominski, Cynthia M. Rand, Laura P. Shone, Brayan V. Seixas, Dianna E. Abney, Chloe Hannan, Peter G. Szilagyi, Jennifer Steffes, Mary Kate Kelly, Alisa J. Stephens-Shields, Robert W. Grundmeier, Russell Localio, Alexander G. Fiks, Margaret Wright, and Sharon G. Humiston
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Male ,medicine.medical_specialty ,Adolescent ,Psychological intervention ,Human Papilloma Virus Vaccine ,Disease cluster ,California ,law.invention ,03 medical and health sciences ,0302 clinical medicine ,Randomized controlled trial ,law ,030225 pediatrics ,Intervention (counseling) ,Cluster Analysis ,Humans ,Medicine ,Longitudinal Studies ,Papillomavirus Vaccines ,Pediatricians ,030212 general & internal medicine ,Human papillomavirus ,Child ,Original Investigation ,business.industry ,Papillomavirus Infections ,Human papillomavirus vaccination ,Vaccination ,Family medicine ,Pediatrics, Perinatology and Child Health ,Education, Medical, Continuing ,Female ,business - Abstract
Importance Missed opportunities for human papillomavirus (HPV) vaccination during pediatric health care visits are common. Objectives To evaluate the effect of online communication training for clinicians on missed opportunities for HPV vaccination rates overall and at well-child care (WCC) visits and visits for acute or chronic illness (hereafter referred to as acute or chronic visits) and on adolescent HPV vaccination rates. Design, Setting, and Participants From December 26, 2018, to July 30, 2019, a longitudinal cluster randomized clinical trial allocated practices to communication training vs standard of care in staggered 6-month periods. A total of 48 primary care pediatric practices in 19 states were recruited from the American Academy of Pediatrics Pediatric Research in Office Settings network. Participants were clinicians in intervention practices. Outcomes were evaluated for all 11- to 17-year-old adolescents attending 24 intervention practices (188 clinicians) and 24 control practices (177 clinicians). Analyses were as randomized and performed on an intent-to-treat basis, accounting for clustering by practice. Interventions Three sequential online educational modules were developed to help participating clinicians communicate with parents about the HPV vaccine. Weekly text messages were sent to participating clinicians to reinforce learning. Statisticians were blinded to group assignment. Main Outcomes and Measures Main outcomes were missed opportunities for HPV vaccination overall and for HPV vaccine initiation and subsequent doses at WCC and acute or chronic visits (visit-level outcome). Secondary outcomes were HPV vaccination rates (person-level outcome). Outcomes were compared during the intervention vs baseline. Results Altogether, 122 of 188 clinicians in intervention practices participated; of these, 120, 119, and 116 clinicians completed training modules 1, 2, and 3, respectively. During the intervention period, 29 206 adolescents (14 664 girls [50.2%]; mean [SD] age, 14.2 [2.0] years) made 15 888 WCC and 28 123 acute or chronic visits to intervention practices; 33 914 adolescents (17 069 girls [50.3%]; mean [SD] age, 14.2 [2.0] years) made 17 910 WCC and 35 281 acute or chronic visits to control practices. Intervention practices reduced missed opportunities overall by 2.4 percentage points (−2.4%; 95% CI, −3.5% to −1.2%) more than controls. Intervention practices reduced missed opportunities for vaccine initiation during WCC visits by 6.8 percentage points (−6.8%; 95% CI, −9.7% to −3.9%) more than controls. The intervention had no effect on missed opportunities for subsequent doses of the HPV vaccine or at acute or chronic visits. Adolescents in intervention practices had a 3.4-percentage point (95% CI, 0.6%-6.2%) greater improvement in HPV vaccine initiation compared with adolescents in control practices. Conclusions and Relevance This scalable, online communication training increased HPV vaccination, particularly HPV vaccine initiation at WCC visits. Results support dissemination of this intervention. Trial Registration ClinicalTrials.gov Identifier:NCT03599557
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- 2021
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11. Effect of State Immunization Information System Based Reminder/Recall for Influenza Vaccinations: A Randomized Trial of Autodialer, Text, and Mailed Messages
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Jonathan D. Campbell, L. Miriam Dickinson, Sharon G. Humiston, Allison Kempe, Xinkai Zhou, Peter G. Szilagyi, Dina Hoefer, Chi-Hong Tseng, Abigail Breck, Laura Helmkamp, Alison W. Saville, Rebecca Valderrama, Heather Roth, Sitaram Vangala, Melanie D Whittington, Cynthia M. Rand, and Christina Albertin
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medicine.medical_specialty ,Colorado ,Adolescent ,Influenza vaccine ,Reminder Systems ,education ,New York ,Influenza vaccinations ,Article ,law.invention ,03 medical and health sciences ,0302 clinical medicine ,Randomized controlled trial ,law ,030225 pediatrics ,Influenza, Human ,medicine ,Humans ,030212 general & internal medicine ,Trial registration ,Child ,Text Messaging ,Reminder recall ,business.industry ,Immunization Programs ,Infant ,Vaccination ,Immunization ,Influenza Vaccines ,Relative risk ,Child, Preschool ,Pediatrics, Perinatology and Child Health ,Emergency medicine ,business ,psychological phenomena and processes - Abstract
Objective To evaluate the effect of different modalities of centralized reminder/recall (autodialer, text, mailed reminders) on increasing childhood influenza vaccination. Study design Two simultaneous randomized clinical trials conducted from October 2017 to April 1, 2018, in New York State and Colorado. There were 61 931 children in New York (136 practices) and 23 845 children in Colorado (42 practices) who were randomized to different centralized reminder/recall modalities—4 arms in New York (autodialer, text, mailed, and no reminder control) and 3 arms in Colorado (autodialer, mailed, and no reminder control). The message content was similar across modalities. Up to 3 reminders were sent for intervention arms. The main outcome measure was receipt of ≥1 influenza vaccine. Results In New York, compared with the control arm (26.6%), postintervention influenza vaccination rates in the autodialer arm (28.0%) were 1.4 percentage points higher (adjusted risk ratio, 1.06; 95% CI, 1.02-1.10), but the rates for text (27.6%) and mail (26.8%) arms were not different from controls. In Colorado, compared with the control arm (29.9%), postintervention influenza vaccination rates for the autodialer (32.9%) and mail (31.5%) arms were 3.0 percentage points (adjusted risk ratio, 1.08; 95% CI, 1.03-1.12) and 1.6 percentage points (adjusted risk ratio, 1.06; 95% CI, 1.02-1.10) higher, respectively. Compared with the control arm, the incremental cost per additional vaccine delivered was $20 (New York) and $16 (Colorado) for autodialer messages. Conclusions Centralized reminder/recall for childhood influenza vaccine was most effective via autodialer, less effective via mail, and not effective via text messages. The impact of each modality was modest. Compared with no reminders, the incremental cost per additional vaccine delivered was also modest for autodialer messages. Trial registration ClinicalTrials.gov : NCT03294473 and NCT03246100 .
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- 2019
12. A Healthy Life for a Child With Medical Complexity: 10 Domains for Conceptualizing Health
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Paul J. Chung, Moira Szilagyi, Thomas S. Klitzner, Elizabeth S. Barnert, Bergen B. Nelson, Ryan J. Coller, Lindsey R. Thompson, and Abigail Breck
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Medical home ,business.industry ,Concept Formation ,Child Health Services ,Applied psychology ,Child Health ,Population health ,Disabled Children ,Group concept mapping ,03 medical and health sciences ,0302 clinical medicine ,Quality of life (healthcare) ,Snowball sampling ,Social integration ,030225 pediatrics ,Concept learning ,Outcome Assessment, Health Care ,Pediatrics, Perinatology and Child Health ,Health care ,Quality of Life ,Humans ,Medicine ,030212 general & internal medicine ,Child ,business - Abstract
BACKGROUND AND OBJECTIVES: Defining and measuring health for children with medical complexity (CMC) is poorly understood. We engaged a diverse national sample of stakeholder experts to generate and then synthesize a comprehensive list of health outcomes for CMC. METHODS: With national snowball sampling of CMC caregiver, advocate, provider, researcher, and policy or health systems experts, we identified 182 invitees for group concept mapping (GCM), a rigorous mixed-methods approach. Respondents (n = 125) first completed Internet-based idea generation by providing unlimited short, free-text responses to the focus prompt, “A healthy life for a child or youth with medical complexity includes: ___.” The resulting 707 statements were reduced to 77 unique ideas. Participants sorted the ideas into clusters based on conceptual similarity and rated items on perceived importance and measurement feasibility. Responses were analyzed and mapped via GCM software. RESULTS: The cluster map best fitting the data had 10 outcome domains: (1) basic needs, (2) inclusive education, (3) child social integration, (4) current child health-related quality of life, (5) long-term child and family self-sufficiency, (6) family social integration, (7) community system supports, (8) health care system supports, (9) a high-quality patient-centered medical home, and (10) family-centered care. Seventeen outcomes representing 8 of the 10 domains were rated as both important and feasible to measure (“go zone”). CONCLUSIONS: GCM identified a rich set of CMC outcome domains. Go-zone items provide an opportunity to test and implement measures that align with a broad view of health for CMC and potentially all children.
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- 2018
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