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1.
Cancer ; 129(7): 1064-1074, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36704995

RESUMO

BACKGROUND: There is little longitudinal information about the type and frequency of harm resulting from medication errors among outpatient children with cancer. We aimed to characterize rates and types of medication errors and harm to outpatient children with leukemia and lymphoma over 7 months of treatment. METHODS: We recruited children taking medications at home for leukemia or lymphoma from three pediatric cancer centers. Errors were identified by chart review, in-home medication review, observation of administration, and interviews. Physician reviewers confirmed error (Fleiss' κ = 0.95), harm (Fleiss' κ = 0.82), and suggested interventions. Generalized linear mixed models with random effects were used to account for clustering by site. RESULTS: Among 131 children taking 1669 medications with 367 home visits, 408 errors were identified, including 242 with potential for harm and 39 with harm (1.0 harm per 1000 patient-days [95% CI, 0.1-9.8]). Ten percent of children were injured by errors and 42% had errors with potential for harm. Twenty-six percent of caregivers reported that miscommunication led to missed doses or overdoses at home. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). CONCLUSIONS: In this longitudinal study, 10% children with leukemia or lymphoma experienced adverse drug events because of outpatient medication errors. Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering. PLAIN LANGUAGE SUMMARY: In this longitudinal study, medication errors in the clinic, pharmacy, or at home among children with leukemia or lymphoma over a 7-month period were common, and 10% suffered harm because of errors. Children on >13 medications had significantly more serious medication errors than those on fewer medications (77% vs 61%; p = .05). Physician reviewers judged that improved communication among caregivers and between caregivers and clinicians may have prevented the most harm (66%). Improvements addressing communication with and among caregivers should be codeveloped with families and based on human-factors engineering.


Assuntos
Leucemia , Linfoma , Neoplasias , Criança , Humanos , Pacientes Ambulatoriais , Estudos Longitudinais , Erros de Medicação/prevenção & controle , Preparações Farmacêuticas , Linfoma/tratamento farmacológico , Leucemia/tratamento farmacológico , Neoplasias/tratamento farmacológico
2.
Pain ; 164(3): 555-562, 2023 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35916736

RESUMO

ABSTRACT: Pain is a common problem among children, particularly those with pediatric chronic diseases. Multifaceted assessment of pain can improve communication about pain and help clinicians characterize, differentiate, and treat a patient's unique experience of pain. Pain quality is an important domain of pain, describing the subjective sensory experiences associated with pain as well as the affective experiences of pain. The aim of the current study was to quantitatively evaluate the measurement properties of the 59 Patient-Reported Outcomes Measurement Information System pediatric pain quality candidate items developed as part of the National Institutes of Health's Patient-Reported Outcomes Measurement Information System initiative with input from children and adolescents with chronic pain. Participants included N = 448 pediatric patients between 8 and 18 years of age with chronic health conditions with a prominent component of chronic or recurrent pain, including juvenile fibromyalgia, juvenile idiopathic arthritis, and sickle cell disease. A confirmatory factor analysis revealed a unidimensional model fit the data best, with 56 of the 59 items demonstrating good psychometric properties for inclusion in the final measure. In addition, a consensus-building method was used to establish 2 versions of a short form measure-one with 8 items focused primarily on the sensory pain qualities and one with 8 items focused on affective pain qualities. The final measure shows good reliability and validity, and is recommended for use in research and clinical care with pediatric populations.


Assuntos
Dor Crônica , Fibromialgia , Adolescente , Humanos , Criança , Reprodutibilidade dos Testes , Dor Crônica/diagnóstico , Psicometria , Medidas de Resultados Relatados pelo Paciente , Sistemas de Informação , Qualidade de Vida , Inquéritos e Questionários
3.
Clin Pediatr (Phila) ; 61(8): 535-541, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35484841

RESUMO

This study determined the types of tobacco products used by caregivers who presented to infant well-child visits (WCVs), tobacco product use by other household members, and caregivers' readiness to quit. The Ohio Chapter of the American Academy of Pediatrics conducted a 10-month quality improvement collaborative to improve providers' tobacco screening and cessation counseling practices. A sub-analysis of the initial screenings was performed to determine types of tobacco products used and caregivers' readiness to quit. Fourteen practices (60 providers) participated, and 3972 initial screens were analyzed; 320 (8.1%) caregivers and 490 (12.4%) household members used tobacco products. Most smoking caregivers and household members exclusively used cigarettes (79% and 72%, respectively). There was no difference in caregiver intention to quit by tobacco type, yet 53% of smoking caregivers were ready to quit. Providers should provide screening and cessation counseling to caregivers of infants at WCVs since many are ready to quit.


Assuntos
Sistemas Eletrônicos de Liberação de Nicotina , Abandono do Hábito de Fumar , Produtos do Tabaco , Tabagismo , Cuidadores , Criança , Humanos , Lactente , Recém-Nascido , Atenção Primária à Saúde , Tabagismo/prevenção & controle , Tabagismo/psicologia
4.
J Pediatr ; 242: 86-92.e3, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-34740588

RESUMO

OBJECTIVES: To evaluate whether Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric patient-reported outcome (PRO) measures can serve as valid endpoints in a clinical trial of a chronic pediatric illness. STUDY DESIGN: We evaluated the responsiveness of PROMIS pediatric measures collected through the Clinical Outcomes of Methotrexate Binary Therapy in Practice (COMBINE) trial, a multicenter, randomized, double-blind, placebo-controlled, pragmatic clinical trial in pediatric patients with Crohn's disease (CD). We examined the relationships between changes in PROMIS pediatric measures and changes in disease activity by evaluating PRO score changes among patients who did and patients who did not experience improvement in disease activity. RESULTS: Participants included 266 children and adolescents with CD from a total of 35 institutions. Over the course of follow-up, participants showed improvement in most PRO domains, with the largest effect sizes observed for the clinically improved group. Patients who maintained steroid-free remission showed significantly lower PRO scores for the Pain Interference, Fatigue, and inflammatory bowel disease (IBD) Symptoms domains and higher scores for the Positive Affect domain. CONCLUSIONS: This study demonstrates the responsiveness of the PROMIS pediatric measures of Fatigue and Pain Interference as study endpoints in a large, multicenter pragmatic trial in pediatric CD, extending a growing body of research supporting the use of PROMIS pediatric measures as reliable PRO endpoints for clinical trials.


Assuntos
Doença de Crohn , Adolescente , Criança , Doença de Crohn/tratamento farmacológico , Fadiga , Humanos , Sistemas de Informação , Dor , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida
5.
Pediatr Nephrol ; 36(8): 2453-2461, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33501558

RESUMO

BACKGROUND: Nonadherence to immunosuppression is common among pediatric, adolescent, and young adult kidney transplant recipients and a leading cause of graft loss. Assessing barriers to medication adherence in clinical practice may identify patients at risk for rejection and provide therapeutic targets. METHODS: Kidney transplant patients and/or their caregivers were assessed for 14 barriers to medication adherence using the barriers assessment tool. We compared rejection rates between patients with at least one reported adherence barrier to those without reported adherence barriers using a Kaplan-Meier estimator and Cox proportional hazard models to adjust for other mediators of acute rejection at 2 years following barriers assessment. RESULTS: Ninety-eight patients were assessed for barriers to adherence. Over the 2-year observation period, 22 patients developed biopsy-proven acute rejection (BPAR). Kaplan-Meier estimates show that patients with an identified barrier to adherence were more likely to have BPAR (p = 0.02) than patients without an identified barrier in the 24 months following barriers assessment. The median time to rejection for patients who experienced acute rejection was 175.5 days (IQR 63-276 days) from the time of barriers assessment. An identified barrier to adherence remained the only statistically significant predictor of BPAR with Cox modeling (HR 2.6, p = 0.04), after accounting for age, sex, and race. CONCLUSIONS: Pediatric and adolescent kidney transplant recipients with identified adherence barriers are at increased risk for acute rejection. Barriers to adherence provide a potentially modifiable therapeutic target that can be assessed in clinic to guide targeted interventions.


Assuntos
Rejeição de Enxerto , Imunossupressores , Transplante de Rim , Adesão à Medicação , Doença Aguda , Adolescente , Criança , Rejeição de Enxerto/epidemiologia , Rejeição de Enxerto/prevenção & controle , Humanos , Imunossupressores/uso terapêutico , Estimativa de Kaplan-Meier , Transplante de Rim/efeitos adversos , Adesão à Medicação/estatística & dados numéricos , Medição de Risco , Adulto Jovem
6.
J Neurooncol ; 149(3): 511-522, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33034839

RESUMO

PURPOSE: Cyclin-dependent kinase-retinoblastoma (CDK-RB) pathway is dysregulated in some diffuse intrinsic pontine gliomas (DIPG). We evaluated safety, feasibility, and early efficacy of the CDK4/6-inhibitor ribociclib, administered following radiotherapy in newly-diagnosed DIPG patients. METHODS: Following radiotherapy, eligible patients received ribociclib in 28-day cycles (350 mg/m2; 21 days on/7 days off). Feasibility endpoints included tolerability for at least 6 courses, and a less than 2-week delay in restarting therapy after 1 dose reduction. Early efficacy was measured by 1-year and median overall survival (OS). Patient/parent-by-proxy reported outcomes measurement information system (PROMIS) assessments were completed prospectively. RESULTS: The study included 10 evaluable patients, 9 DIPG and 1 diffuse midline glioma (DMG)-all 3.7 to 19.8 years of age. The median number of courses was 8 (range 3-14). Three patients required dose reduction for grade-4 neutropenia, and 1 discontinued therapy for hematological toxicity following course 4. The most common grade-3/4 toxicity was myelosuppression. After 2 courses, MRI evaluations in 4 patients revealed increased necrotic volume, associated with new neurological symptoms in 3 patients. The 1-year and median OS for DIPG was 89% and 16.1 months (range 10-30), respectively; the DMG patient died at 6 months post-diagnosis. Five patients donated brain tissue and tumor; 3 were RB+ . CONCLUSIONS: Ribociclib administered following radiotherapy is feasible in DIPG and DMG. Increased tumor necrosis may represent a treatment effect. These data warrant further prospective volumetric analyses of tumors with necrosis. Feasibility and stabilization findings support further investigation of ribociclib in combination therapies. TRIAL REGISTRATION: NCT02607124.


Assuntos
Aminopiridinas/uso terapêutico , Neoplasias do Tronco Encefálico/terapia , Quimiorradioterapia/métodos , Glioma Pontino Intrínseco Difuso/terapia , Purinas/uso terapêutico , Adolescente , Adulto , Aminopiridinas/farmacocinética , Neoplasias do Tronco Encefálico/patologia , Criança , Pré-Escolar , Glioma Pontino Intrínseco Difuso/patologia , Feminino , Seguimentos , Humanos , Masculino , Dose Máxima Tolerável , Prognóstico , Purinas/farmacocinética , Distribuição Tecidual , Adulto Jovem
7.
Inj Epidemiol ; 7(Suppl 1): 25, 2020 Jun 12.
Artigo em Inglês | MEDLINE | ID: mdl-32532352

RESUMO

BACKGROUND: Tobacco smoke exposure (TSE) and inappropriate sleep position/environments contribute to preventable infant deaths. The objective of our quality improvement (QI) program was to increase primary care provider (PCP) screening and counseling for TSE and safe sleep risks at well-child visits (WCVs) and to assess caregiver behavior changes at subsequent visits. METHODS: Pediatric practices, recruited from the Ohio Chapter, American Academy of Pediatrics' database, self-selected to participate in this TSE and safe sleep PCP QI program. At every WCV over a 10-month period, caregivers with children < 1 year old were to be screened and counseled by providers. Caregiver demographics, TSE, and safe sleep practices were assessed. Individual PCP results were paired with subsequent family screening tools at follow up visits to determine changes in TSE and safe sleep practices. Differences in frequencies were determined and paired t-tests were used to compare means. RESULTS: Fourteen practices (60 providers) participated; 7289 screens were completed: 3972 (54.5%) initial screens and 1769 (24.3%) subsequent WCV screens. Caregivers on the initial screen were primarily white (61.7%), mothers (86.0%) with public insurance (41.7%). Within the first month after QI program initiation, PCPs TSE screening was during 80% of WCVs, which increased to > 90% by end of the QI program. A total of 637 /3953 (16.1%) screened positive for home TSE on the initial visit: 320/3953 (8.1%) exposed by at least the primary caregivers, and 317/3953 (8.0%) exposed by a home adult smoker (not the identified caregiver). Of caregivers receiving smoking counseling with subsequent follow-up WCV (n = 100), the mean number of cigarettes smoked daily decreased significantly from 10.6 to 4.6 (p = 0.03). Thirty-four percent of caregivers (34/100) reported they quit smoking at their second visit. A total of 1072 (27%) infants screened at risk for inappropriate sleep position or environment at their initial visit. Of these at-risk infants whose caregivers received safe sleep counseling, 49.1% practiced safer sleep behaviors at follow-up. CONCLUSIONS: PCPs participating in a QI program increased screening at WCVs for infant mortality risks. After counseling and providing resources about TSE and safe sleep, many caregivers reported practicing safer behaviors at their next WCV.

8.
Cleft Palate Craniofac J ; 57(2): 198-207, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31597471

RESUMO

OBJECTIVE: To identify child-, surgeon-, and hospital-specific factors at the time of primary cleft lip repair that are associated with the use of secondary cleft lip surgery. DESIGN: Retrospective cohort study. SETTING: Forty-nine pediatric hospitals. PARTICIPANTS: Children who underwent cleft lip repair between 1999 and 2015. MAIN OUTCOME MEASURE: Time from primary cleft lip repair to secondary lip surgery. RESULTS: By 5 years after primary lip repair, 24.0% of children had undergone a secondary lip surgery. In multivariable analysis, primary lip repair before 3 months had a 1.22-fold increased hazard of secondary surgery (95% confidence interval [CI]: 1.02-1.46) compared to repair at 7 to 12 months of age, and children with multiple congenital anomalies had a 0.77-fold decreased hazard of secondary surgery (95% CI: 0.68-0.87). After adjusting for cleft type, age at repair, presence of multiple congenital anomalies, and procedure volume, there remained substantial variation in secondary surgery use among surgeons and hospitals (P < .01). For children with unilateral cleft lip repaired at 3 to 6 months of age, the predicted proportion of children undergoing secondary surgery within 5 years of primary repair ranged from 4.9% to 21.8% across surgeons and from 4.5% to 24.7% across hospitals. CONCLUSIONS: There are substantial differences among surgeons and hospitals in the rates of secondary lip surgery. Further work is needed to identify causes for this variation among providers.


Assuntos
Fenda Labial , Fissura Palatina , Cirurgiões , Criança , Pré-Escolar , Hospitais Pediátricos , Humanos , Estudos Retrospectivos , Resultado do Tratamento
9.
Cleft Palate Craniofac J ; 56(5): 586-594, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30244603

RESUMO

OBJECTIVE: To identify child-, surgeon- and hospital-specific factors at the time of primary cleft palate repair that are associated with the use of secondary palate surgery. DESIGN: Retrospective cohort study. SETTING: Forty-nine pediatric hospitals. PARTICIPANTS: Children who underwent cleft palate repair between 1998 and 2015. MAIN OUTCOME MEASURE: Time from primary cleft palate repair to secondary palate surgery. RESULTS: By 5 years after the primary palate repair, 27.5% of children had undergone secondary palate surgery. In multivariable analysis, cleft type and age at primary palate repair were both associated with secondary surgery ( P < .01). Children with unilateral cleft lip and palate had a 1.69-fold increased hazard of secondary surgery (95% confidence interval [CI]: 1.54-1.85) compared to children with cleft palate alone. Primary palate repair before 9 months had a 3.99-fold increased hazard of secondary surgery (95% CI: 3.39-4.07) compared to repair at 16 to 24 months of age. After adjusting for cleft type, age at repair, and procedure volume, there remained substantial variation in secondary surgery use among surgeons and hospitals ( P < .01). For children with isolated cleft palate, the predicted proportion of children undergoing secondary surgery within 5 years of primary repair ranged from 8.5% to 46.0% across surgeons and 9.1% to 49.4% across hospitals. CONCLUSIONS: There are substantial differences among surgeons and hospitals in the rates of secondary palate surgery. Further work is needed to identify causes for this variation among providers and develop interventions to reduce the need for secondary surgery.


Assuntos
Fenda Labial , Fissura Palatina , Cirurgiões , Criança , Fissura Palatina/cirurgia , Feminino , Humanos , Masculino , Estudos Retrospectivos
10.
JAMA Pediatr ; 173(1): 44-51, 2019 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-30419138

RESUMO

Importance: Quality improvement initiatives demonstrate the contribution of reliable nursing care to gains in clinical and safety outcomes in neonatal intensive care units (NICUs); when core care is missed, outcomes can worsen. Objective: To evaluate the association of NICU nurse workload with missed nursing care. Design, Setting, and Participants: A prospective design was used to evaluate associations between shift-level workload of individual nurses and missed care for assigned infants from March 1, 2013, through January 31, 2014, at a 52-bed level IV NICU in a Midwestern academic medical center. A convenience sample of registered nurses who provided direct patient care and completed unit orientation were enrolled. Nurses reported care during each shift for individual infants whose clinical data were extracted from the electronic health record. Data were analyzed from January 1, 2015, through August 13, 2018. Exposures: Workload was assessed each shift with objective measures (infant-to-nurse staffing ratio and infant acuity scores) and a subjective measure (the National Aeronautics and Space Administration Task Load Index [NASA-TLX]). Main Outcomes and Measures: Missed nursing care was measured by self-report of omission of 11 essential care practices. Cross-classified, multilevel logistic regression models were used to estimate associations of workload with missed care. Results: A total of 136 nurses provided reports of shift-level workload and missed nursing care for 418 infants during 332 shifts of 12 hours each. When workload variables were modeled independently, 7 of 12 models demonstrated a significant worsening association of increased infant-to-nurse ratio with odds of missed care (eg, nurses caring for ≥3 infants were 2.51 times more likely to report missing any care during the shift [95% credible interval, 1.81-3.47]), and all 12 models demonstrated a significant worsening association of increased NASA-TLX subjective workload ratings with odds of missed care (eg, each 5-point increase in a nurse's NASA-TLX rating during a shift was associated with a 34% increase in the likelihood of missing a nursing assessment for his or her assigned infant[s] during the same shift [95% credible interval, 1.30-1.39]). When modeling all workload variables jointly, only 4 of 12 models demonstrated significant association of staffing ratios with odds of missed care, whereas the association with NASA-TLX ratings remained significant in all models. Few associations of acuity scores were observed across modeling strategies. Conclusions and Relevance: The workload of NICU nurses is significantly associated with missed nursing care, and subjective workload ratings are particularly important. Subjective workload represents an important aspect of nurse workload that remains largely unmeasured despite high potential for intervention.


Assuntos
Enfermagem de Cuidados Críticos/organização & administração , Unidades de Terapia Intensiva Neonatal/organização & administração , Terapia Intensiva Neonatal/organização & administração , Erros Médicos/estatística & dados numéricos , Enfermagem Neonatal/organização & administração , Recursos Humanos de Enfermagem Hospitalar/organização & administração , Carga de Trabalho/estatística & dados numéricos , Enfermagem de Cuidados Críticos/estatística & dados numéricos , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal/estatística & dados numéricos , Terapia Intensiva Neonatal/estatística & dados numéricos , Modelos Logísticos , Enfermagem Neonatal/estatística & dados numéricos , Recursos Humanos de Enfermagem Hospitalar/estatística & dados numéricos , Estudos Prospectivos , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/estatística & dados numéricos , Autorrelato
11.
BMJ Paediatr Open ; 1(1)2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-29479567

RESUMO

OBJECTIVES: To test whether cleft centres vary in their use of secondary cleft palate surgery, also known as revision palate surgery, and if so to identify modifiable hospital- and surgeon-factors that are associated with use of secondary surgery. DESIGN: Retrospective cohort study. SETTING: Forty-three paediatric hospitals across the United States. PATIENTS: Children with cleft lip and palate who underwent primary cleft palate repair from 1999 to 2013. MAIN OUTCOME MEASURES: Time from primary cleft palate repair to secondary palate surgery. RESULTS: We identified 4,939 children who underwent primary cleft palate repair. At ten years after primary palate repair, 44% of children had undergone secondary palate surgery. Significant variation existed among hospitals (p<0.001); the proportion of children undergoing secondary surgery by 10 years ranged from 9% to 77% across hospitals. After adjusting for patient demographics, primary palate repair before nine months of age was associated with an increased hazard of secondary palate surgery (initial hazard ratio 6.74, 95% CI 5.30-8.73). Postoperative antibiotics, surgeon procedure volume, and hospital procedure volume were not associated with time to secondary surgery (p>0.05). Of the outcome variation attributable to hospitals and surgeons, between-hospital differences accounted for 59% (p<0.001), while between-surgeon differences accounted for 41% (p<0.001). CONCLUSIONS: Substantial variation in the hazard of secondary palate surgery exists depending on a child's age at primary palate repair and the hospital and surgeon performing their repair. Performing primary palate repair before nine months of age substantially increases the hazard of secondary surgery. Further research is needed to identify other factors contributing to variation in palate surgery outcomes among hospitals and surgeons.

12.
J Trauma Acute Care Surg ; 81(4 Suppl 1): S8-S13, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-27488487

RESUMO

BACKGROUND: A standardized injury prevention (IP) screening tool can identify family risks and allow pediatricians to address behaviors. To assess behavior changes on later screens, the tool must be reliable for an individual and ideally between household members. Little research has examined the reliability of safety screening tool questions. This study utilized test-retest reliability of parent responses on an existing IP questionnaire and also compared responses between household parents. METHODS: Investigators recruited parents of children 0 to 1 year of age during admission to a tertiary care children's hospital. When both parents were present, one was chosen as the "primary" respondent. Primary respondents completed the 30-question IP screening tool after consent, and they were re-screened approximately 4 hours later to test individual reliability. The "second" parent, when present, only completed the tool once. All participants received a 10-dollar gift card. Cohen's Kappa was used to estimate test-retest reliability and inter-rater agreement. Standard test-retest criteria consider Kappa values: 0.0 to 0.40 poor to fair, 0.41 to 0.60 moderate, 0.61 to 0.80 substantial, and 0.81 to 1.00 as almost perfect reliability. RESULTS: One hundred five families participated, with five lost to follow-up. Thirty-two (30.5%) parent dyads completed the tool. Primary respondents were generally mothers (88%) and Caucasian (72%). Test-retest of the primary respondents showed their responses to be almost perfect; average 0.82 (SD = 0.13, range 0.49-1.00). Seventeen questions had almost perfect test-retest reliability and 11 had substantial reliability. However, inter-rater agreement between household members for 12 objective questions showed little agreement between responses; inter-rater agreement averaged 0.35 (SD = 0.34, range -0.19-1.00). One question had almost perfect inter-rater agreement and two had substantial inter-rater agreement. CONCLUSIONS: The IP screening tool used by a single individual had excellent test-retest reliability for nearly all questions. However, when a reporter changes from pre- to postintervention, differences may reflect poor reliability or different subjective experiences rather than true change.


Assuntos
Acidentes Domésticos/prevenção & controle , Programas de Rastreamento/métodos , Ferimentos e Lesões/prevenção & controle , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Reprodutibilidade dos Testes , Medição de Risco , Inquéritos e Questionários
13.
Plast Reconstr Surg Glob Open ; 3(7): e442, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26301131

RESUMO

BACKGROUND: The burden of care for children with cleft lip and palate extends beyond primary repair. Children may undergo multiple secondary surgeries to improve appearance or speech. The purpose of this study was to compare the use of secondary surgery between cleft centers. METHODS: This retrospective cohort study included 130 children with complete unilateral cleft lip and palate treated consecutively at 4 cleft centers in North America. Data were collected on all lip, palate, and nasal surgeries. Nasolabial appearance was rated by a panel of judges using the Asher-McDade scale. Risk of secondary surgery was compared between centers using the log-rank test, and hazard ratios estimated with a Cox proportional hazards model. RESULTS: Median follow-up was 18 years (interquartile range, 15-19). There were significant differences among centers in the risks of secondary lip surgery (P < 0.001) and secondary rhinoplasty (P < 0.001). The cumulative risk of secondary lip surgery by 10 years of age ranged from 5% to 60% among centers. The cumulative risk of secondary rhinoplasty by 20 years of age ranged from 47% to 79% among centers. No significant differences in nasolabial appearance were found between children who underwent secondary lip or nasal surgery and children who underwent only primary surgery (P > 0.10). CONCLUSIONS: Although some cleft centers were significantly more likely to perform secondary surgery, the use of secondary surgery did not achieve significantly better nasolabial appearance than what was achieved by children who underwent only primary surgery.

14.
Med Care ; 52(4): 354-61, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24848207

RESUMO

BACKGROUND: Patient navigation--the provision of logistical, educational, and emotional support needed to help patients "navigate around" barriers to high-quality cancer treatment offers promise. No patient-reported outcome measures currently exist that assess patient navigation from the patient's perspective. We use a partial independence item response theory model to report on the psychometric properties of the Patient Satisfaction with Navigation, Logistical measure developed for this purpose. METHODS: We used data from an ethnically diverse sample (n = 1873) from the National Cancer Institute Patient Navigation Research Program. We included individuals with the presence of an abnormal breast, cervical, colorectal, or prostate cancer finding. RESULTS: The partial independence item response theory model fit well. Results indicated that scores derived from responses provide extremely precise and reliable measurement between -2.5 SD below and 2 SD above the mean and acceptably precise and reliable measurement across nearly the entire range. CONCLUSIONS: Our findings provide evidence in support of the Patient Satisfaction with Navigation, Logistical. Scale users should utilize 1 of the 2 described methods to create scores.


Assuntos
Acessibilidade aos Serviços de Saúde/normas , Satisfação do Paciente , Atenção à Saúde/métodos , Atenção à Saúde/normas , Feminino , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/terapia , Satisfação do Paciente/estatística & dados numéricos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
15.
Ann Am Thorac Soc ; 10(3): 205-12, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23802816

RESUMO

RATIONALE: The efficacy of inhaled tobramycin on chronic Pseudomonas aeruginosa infections in patients with cystic fibrosis (CF) has been established in clinical trials. However, little is known about its clinical effectiveness on lung function outside randomized controlled trial settings; conventional analysis of existing registry data has heretofore been confounded by treatment selection bias. OBJECTIVE: To determine effectiveness of inhaled tobramycin on FEV1 decline in patients with chronic P. aeruginosa infections using observational data from the Cystic Fibrosis Foundation Patient Registry. METHODS: Patient-level tobramycin use was measured at first chronic P. aeruginosa infection (n = 13,686 patients; age, 6-21 yr). Decline in FEV1 2 years after infection was estimated for patients treated with tobramycin and compared with untreated patients. Multiple linear regressions with confounder adjustment and propensity scores were used to estimate mean FEV1 decline for each group. Because care is organized by centers, we used center-specific prescription rates as an instrument to reduce treatment-by-condition bias. MEASUREMENTS AND MAIN RESULTS: Using center-level prescribing rates, instrumental variables analysis showed less FEV1 decline for patients who received tobramycin when first eligible compared with those who did not receive tobramycin (difference, 2.55% predicted; 95% confidence interval, 0.16-4.94; P = 0.0366). CONCLUSIONS: Inhaled tobramycin is effective in reducing lung function decline among patients 6 to 21 years of age with CF. Because CF care is organized by center, using center-specific prescription rates as an instrumental variable is a feasible approach to using the Cystic Fibrosis Foundation Patient Registry to determine treatment effectiveness. More generally, this approach can correct for treatment-by-condition bias arising from observational studies.


Assuntos
Fibrose Cística/tratamento farmacológico , Fluxo Expiratório Máximo/efeitos dos fármacos , Infecções por Pseudomonas/tratamento farmacológico , Tobramicina/administração & dosagem , Administração por Inalação , Adolescente , Antibacterianos/administração & dosagem , Criança , Fibrose Cística/complicações , Fibrose Cística/fisiopatologia , Feminino , Seguimentos , Humanos , Masculino , Fluxo Expiratório Máximo/fisiologia , Infecções por Pseudomonas/complicações , Infecções por Pseudomonas/fisiopatologia , Pseudomonas aeruginosa/isolamento & purificação , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
16.
Acad Pediatr ; 11(2): 128-35, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-20227936

RESUMO

OBJECTIVE: Insufficient research has established the measurement properties of the Children with Special Health Care Needs (CSHCN) Screener. This leaves unclear whether CSHCN Screener-based estimates reliably identify CSHCN. We used classical and modern test theory to establish the CSHCN Screener's internal psychometric properties. METHODS: Data came from the 2005-2006 National Survey of Children with Special Health Care Needs (NS-CSHCN), a nationally representative survey of US children (N = 359,154). RESULTS: Cronbach's α, a measure of internal reliability, equaled .76. Confirmatory factor analysis for ordered-categorical measures indicated that a single underlying trait that we label health-condition-complexity underlies CSHCN Screener responses. Item response theory showed that responses provide particularly precise measurement among children experiencing elevated health-condition-complexity trait levels. CONCLUSIONS: Findings demonstrate that responses to the CSHCN Screener as used in the NS-CSHCN have good internal psychometric properties and include minimal random measurement error. Epidemiologists, clinicians and others can rely on CSHCN Screener responses to reliably identify CSHCN experiencing 1 or more of the 5 consequences included on the CSHCN Screener.


Assuntos
Doença Crônica/classificação , Avaliação da Deficiência , Crianças com Deficiência/classificação , Psicometria , Criança , Doença Crônica/epidemiologia , Crianças com Deficiência/estatística & dados numéricos , Análise Fatorial , Humanos , Programas de Rastreamento/métodos , Reprodutibilidade dos Testes , Estados Unidos/epidemiologia
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