Speech difficulties and patient health communication mediating effects on worry and health‐related quality of life in children, adolescents, and young adults with Neurofibromatosis Type 1

The objective was to investigate the serial mediating effects of speech difficulties, patient health communication, and disease‐specific worry in the relationship between neurofibromatosis (NF) symptoms (pain and skin symptoms) and total generic health‐related quality of life (HRQOL) in children, adolescents, and young adults with NF Type 1 (NF1) from the patient perspective. The Speech, Communication, Worry, Pain, Skin Itch Bother, and Skin Sensations Scales from the Pediatric Quality of Life Inventory (PedsQL) NF1 Module and the PedsQL 4.0 Generic Core Scales were completed in a multi‐site national study by 305 patients ages 5–25 years. A serial multiple mediator model analysis was conducted to test the hypothesized sequential mediating effects of speech difficulties, health communication, and worry as intervening variables in the association between NF1 symptoms and HRQOL. Symptoms predictive effects on total generic HRQOL were serially mediated by speech difficulties, patient health communication, and worry. In predictive analytics models utilizing hierarchical multiple regression analyses with age and gender demographic covariates, the pain, skin itch bother, and skin sensations multiple mediator models accounted for 61%, 59%, and 56% of the variance in generic HRQOL (p < .001), reflecting large effect sizes. Speech difficulties, patient health communication, and disease‐specific worry explain in part the mechanism of symptoms predictive effects on total generic HRQOL in pediatric patients with NF1. Identifying NF1‐specific predictors and serial mediators of total generic HRQOL in pediatric patients with NF1 from the patient perspective enables a patient‐centered comprehensive care approach for children, adolescents, and young adults with NF1

Implementation of Continuous Capnography Is Associated With a Decreased Utilization of Blood Gases

Background Capnography provides a continuous, non-invasive monitoring of the CO2 to assess adequacy of ventilation and provide added safety features in mechanically ventilated patients by allowing for quick identification of unplanned extubation. These monitors may allow for decreased utilization of blood gases. The objective was to determine if implementation of continuous capnography monitoring decreases the utilization of blood gases resulting in decreased charges. Methods This is a retrospective review of a quality improvement project that compares the utilization of blood gases before and after the implementation of standard continuous capnography. The time period of April 2010 to September 2010 was compared to April 2011 to September 2011. Parameters collected included total number of blood gases analyzed, cost of blood gas analysis, ventilator and patient days. Results The total number of blood gases after the institution of end tidal CO2 monitoring decreased from 12,937 in 2009 and 13,171 in 2010 to 8,070 in 2011. The average number of blood gases per encounter decreased from 20.8 in 2009 and 21.6 in 2010 to 13.8 post intervention. The blood gases per ventilator day decreased from 4.94 in 2009 and 4.76 in 2010 to 3.30 post intervention. The total charge savings over a 6-month period was $880,496. Conclusions Continuous capnography resulted in a significant savings over a 6-month period by decreasing the utilization of blood gas measurements

Development of the Adult PedsQL™ Neurofibromatosis Type 1 Module: Initial Feasibility, Reliability and Validity

BACKGROUND: Neurofibromatosis type 1 (NF1) is a common autosomal dominant genetic disorder with significant impact on health-related quality of life (HRQOL). Research in understanding the pathogenetic mechanisms of neurofibroma development has led to the use of new clinical trials for the treatment of NF1. One of the most important outcomes of a trial is improvement in quality of life, however, no condition specific HRQOL instrument for NF1 exists. The objective of this study was to develop an NF1 HRQOL instrument as a module of PedsQL™ and to test for its initial feasibility, internal consistency reliability and validity in adults with NF1. METHODS: The NF1 specific HRQOL instrument was developed using a standard method of PedsQL™ module development – literature review, focus group/semi-structured interviews, cognitive interviews and experts’ review of initial draft, pilot testing and field testing. Field testing involved 134 adults with NF1. Feasibility was measured by the percentage of missing responses, internal consistency reliability was measured with Cronbach’s alpha and validity was measured by the known-groups method. RESULTS: Feasibility, measured by the percentage of missing responses was 4.8% for all subscales on the adult version of the NF1-specific instrument. Internal consistency reliability for the Total Score (alpha =0.97) and subscale reliabilities ranging from 0.72 to 0.96 were acceptable for group comparisons. The PedsQL™ NF1 module distinguished between NF1 adults with excellent to very good, good, and fair to poor health status. CONCLUSIONS: The results demonstrate the initial feasibility, reliability and validity of the PedsQL™ NF1 module in adult patients. The PedsQL™ NF1 Module can be used to understand the multidimensional nature of NF1 on the HRQOL patients with this disorder

Effectiveness of Cross‐cultural Education for Medical Residents Caring for Burmese Refugees

Background: Limited resources are available to educate health professionals on cultural considerations and specific healthcare needs of Burmese refugees. The objective of this study was to determine the effectiveness of a module focused on cross-cultural considerations when caring for Burmese refugees. Methods: A brief educational module using anonymously tracked pre- and post-intervention, self-administered surveys was developed and studied. The surveys measured pediatric and family medicine residents' knowledge, attitudes, and comfort in caring for Burmese refugees. Paired t-tests for continuous variables and Fisher's exact tests for categorical variables were used to test pre- and post-intervention differences. We included open-ended questions for residents to describe their experiences with the Burmese population. Results: The survey was available to 173 residents. Forty-four pre- and post-intervention surveys were completed (response rate of 25%). Resident comfort in caring for Burmese increased significantly after the module (P = 0.04). Resident knowledge of population-specific cultural information increased regarding ethnic groups (P = 0.004), appropriate laboratory use (P = 0.04), and history gathering (P = 0.001). Areas of improved resident attitudes included comprehension of information from families (P = 0.03) and length of time required with interpreter (P = 0.01). Thematic evaluation of qualitative data highlighted four themes: access to interpreter and resources, verbal communication, nonverbal communication, and relationship building with cultural considerations. Discussion: A brief intervention for residents has the potential to improve knowledge, attitudes, and comfort in caring for Burmese patients. Interventions focused on cultural considerations in medical care may improve cultural competency when caring for vulnerable patient populations