Development of Proxy and Self-report Burn Model System Pediatric Itch Interference Scales: A National Institute on Disability, Independent Living, and Rehabilitation Research Burn Model System Study

2020 ◽  
Author(s):  
Dagmar Amtmann ◽  
Alyssa M Bamer ◽  
Kara McMullen ◽  
Karen Kowalske ◽  
Jeffrey C Schneider ◽  
...  
Keyword(s):  
Independent Living ◽  
Burn Injury ◽  
Reliability And Validity ◽  
Epidemiological Studies ◽  
Theory Model ◽  
Model System ◽  
Self Report ◽  
Proxy Report ◽  
Burn Survivors ◽  
The Mean

Abstract Pruritus is a commonly reported symptom after burn injury. Valid and reliable scales to measure itch in pediatric burn survivors are important for treatment and epidemiological studies. This study sought to develop psychometrically sound, publicly available self- and proxy-report measures of itch for use in pediatric burn survivors suitable for use in research and clinical practice. A panel of burn experts developed a definition of itch interference and a set of parallel self- and proxy-report candidate items that covered important activities affected by itch. Candidate items were evaluated in cognitive interviews with pediatric burn survivors (n = 4) and proxies (n = 2). Items were translated to Spanish and administered in both English and Spanish to a sample (N = 264) of pediatric burn survivors and/or their proxy enrolled in the Burn Model System (BMS) longitudinal database. The mean age of the pediatric sample was 13 years and average time since burn 5 years. The final itch interference measures each included 5 parallel items calibrated using a one-parameter graded response item response theory model, with a mean of 50 representing the average itch interference of the sample. Reliability of the scores is excellent between the mean and two standard deviations above. Initial analyses provide support for validity of the score. Concordance between the self- and proxy-report scores was moderate (ICC = 0.68). The results support the reliability and validity of the itch scale in children and youth with burn injury. The new BMS Pediatric Itch Interference scales are freely and publicly available at https://burndata.washington.edu/itch.

scholarly journals “Living Well” After Burn Injury: Using Case Reports to Illustrate Significant Contributions From the Burn Model System Research Program

2020 ◽  
Author(s):  
Gretchen J Carrougher ◽  
Kara McMullen ◽  
Dagmar Amtmann ◽  
Audrey E Wolfe ◽  
Diana Tenney ◽  
...  
Keyword(s):  
Research Program ◽  
Independent Living ◽  
Burn Injury ◽  
Case Reports ◽  
Model System ◽  
Knowledge Generation ◽  
Case Study Methodology ◽  
Personal Benefit ◽  
The Impact

Abstract The Burn Model System (BMS) program of research has been funded since 1993 by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). The overarching aim of this program is to improve outcomes and quality of life for people with burns in the areas of health and function, employment, and community living and participation. This review reports on BMS contributions that have affected the lives of individuals with a significant burn injury using case reports to associate BMS contributions with recovery. In January 2020, current BMS grantee researchers assessed peer-reviewed BMS publications from 1994 to 2020. Using case report methodology, contributions were linked to three individuals treated at one of the four Burn Model System institutions. With over 25 years of NIDILRR funding, unique BMS contributions to patient recovery were identified and categorized into one of several domains: treatment, assessment measures, sequelae, peer support, employment, and long-term functional outcomes. A second review for significant results of BMS research that add to the understanding of burn injury, pathophysiology, and recovery research was identified and categorized as injury recovery research. The case study participants featured in this review identified select NIDILRR research contributions as having direct, personal benefit to their recovery. The knowledge generation and clinical innovation that this research program has contributed to our collective understanding of recovery after burn injury is considerable. Using case study methodology with three adult burn survivors, we highlight the impact and individual significance of program findings and reinforce the recognition that the value of any clinical research must have relevance to the lives of the study population.

scholarly journals Caries Experience of Adults with Intellectual Disability in the Western Part of Germany

2021 ◽  
Vol 10 (12) ◽  
pp. 2602
Author(s):  
Peter Schmidt ◽  
Michael Egermann ◽  
Claudia Sauerland ◽  
Andreas G. Schulte
Keyword(s):  
Oral Health ◽  
Living Arrangements ◽  
Independent Living ◽  
Dental Health ◽  
Epidemiological Studies ◽  
Sociodemographic Factors ◽  
Caries Experience ◽  
Fissure Sealant ◽  
The Mean ◽  
Adults With Intellectual Disabilities

Background: In Germany, there is limited evidence on the oral health of adults with intellectual disabilities (AwID). Methods: In 2017/18, dental examinations of AwID and a questionnaire survey of their legal guardians were carried out. The mean D3MFT values were calculated to describe the caries experience. The prevalence of AwID with at least one fissure sealant (FS) was determined and associations between caries experience and various sociodemographic factors (e.g., age, gender, living arrangements) were investigated. Results: The data of 132 AwID (mean age 35.2 years; range 18–69 years) could be included. For all AwIDs the mean D3MFT value was 9.5 (95% CI 8.1–11.0). The mean D3MFT value for the 35–44-year-olds was 10.9 (95% CI 8.4–13.4). All caries-free persons (n = 14) were younger than 45 years. Furthermore, the mean D3MFT value for AwID living with their parents was lower at a statistically significant level than that of AwID in independent living arrangements. Moreover, younger AwIDs (18–34-year-olds) with at least one FS had a statistically significantly lower mean D3MFT value compared to those without any FS (D3MFT: 3.0 vs. 6.7). Conclusions: The dental health of AwID has improved in Germany in recent years, but, on average, AwIDs still have more missing teeth than their peers in the general population. Oral epidemiological studies on AwID should include information on their living arrangements to assess potential associations between sociodemographic factors and oral health.

“The Whole is More than the Sum of its Parts”: The Effects of Grouping and Randomizing Items on the Reliability and Validity of Questionnaires

1997 ◽  
Vol 13 (2) ◽  
pp. 67-74 ◽  
Author(s):  
Gabriele Helga Franke
Keyword(s):  
University Students ◽  
Group Testing ◽  
Reliability And Validity ◽  
Nursing School ◽  
Self Report ◽  
School Students ◽  
Application Study ◽  
Mean Values ◽  
The Mean ◽  
Item Presentation

This investigation was concerned with the widely spread practice to extract subscales from extensive psychodiagnostic inventories and to present their items in questionnaires as homogeneous item-blocks. By way of examining the effects of the mode of item-presentation on the reliability and validity, the frequently used and validated SCL-90-R was analyzed as a prototype of multidimensional symptom self-report inventories. Two studies were conducted in different contexts of application (study I: controlled group testing, study II: non-controlled individual testing) and involved different groups of subjects (study I: 130 nursing school students, study II: 134 university students). In both studies the standard item-arrangement was contrasted with the item-block presentation, which groups together items measuring the same dimension. The results revealed significant effects of item-blocking on the mean values, on the reliability, and the validity of the questionnaire. The findings seriously call into question the admissibility of subscale-extraction for self-report inventories. We conclude that the Gestalt paradigm, “The whole is more than the sum of its parts,” is valid for multidimensional psychodiagnostic inventories.

The Asthma Belief Survey: Development and Testing

2004 ◽  
Vol 12 (1) ◽  
pp. 7-19 ◽  
Author(s):  
Barbara Velsor-Friedrich ◽  
Therese D. Pigott ◽  
Brenda Srof ◽  
Robin Froman
Keyword(s):  
Self Efficacy ◽  
Reliability And Validity ◽  
Survey Development ◽  
Self Report ◽  
Health Maintenance ◽  
Asthma Knowledge ◽  
Significant Relationships ◽  
Single Scale ◽  
The Mean ◽  
Care Practices

Accurate evaluation of asthma self-efficacy is essential to the effective management of asthma. This article describes the development and testing of the Asthma Belief Survey (ABS). The instrument is a 15-item tool that uses a 5-point self-report scale to measure asthma self-efficacy in relation to daily asthma maintenance and an asthma crisis. This instrument was tested with a sample of 79 African American school children, who attended eight inner-city elementary schools. The mean age of the sample was 11.05 years with a range of 8 to 14 years. The majority of students had been diagnosed with asthma prior to the age of 5 years. The Asthma Belief Survey demonstrated good psychometric properties: good Cronbach’s α reliability coefficient (.83), coherence as a single scale measuring children’s self-efficacy in treating their own asthma, and significant relationships with scales of asthma knowledge (r= .51,p< .000) and asthma self-care practices (r= .52,p< .001). The Asthma Belief Survey has sound reliability and validity evidence to support its use to measure a child’s asthma self-management self-efficacy. The practitioner can use this instrument to assess a child’s self-efficacy in the areas of asthma health maintenance and avoidance of asthma episodes.

scholarly journals Longitudinal Evaluation of Pressure Applied by Custom Fabricated Garments Worn by Adult Burn Survivors

2019 ◽  
Author(s):  
Bernadette Nedelec ◽  
Ana De Oliveira ◽  
Valerie Calva ◽  
Marie-Andrée Couture ◽  
Chantale Poulin ◽  
...  
Keyword(s):  
Repeated Measures ◽  
Mixed Model ◽  
Burn Injury ◽  
Scientific Evidence ◽  
Normal Skin ◽  
Baseline Pressure ◽  
System Pressure ◽  
Burn Survivors ◽  
Mean Pressure ◽  
The Mean

Abstract Custom fabricated pressure garments (PGs) are commonly used to prevent or treat hypertrophic scars (HSc) after burn injury. However, there is minimal scientific evidence quantifying pressure after standard measurement and fitting techniques. Adult burn survivors whose HSc was treated with PGs were recruited. Trained fitters, blinded to study locations and results, took the garment measures. Once the PGs arrived and were fitted, baseline pressure measures at HSc and normal skin (NS) sites were determined using the Pliance X® System. Pressure readings were repeated at 1, 2, and 3 months. The mean baseline pressure was 15.3 (SD 10.4) at HSc and 13.4 (SD 11.9) at NS sites. There was a significant reduction during the first month at both sites (P = .0002 HSc; P = .0002 NS). A multivariable linear regression mixed model, adjusting for garment type, baseline pressure, and repeated measures, revealed further reduction at HSc sites between 1 and 2 months (P = .03). By 3 months, the mean pressure reduced to 9.9 (SD 6.7) and 9.15 (SD 7.2) mm Hg at HSc and NS sites, respectively. At each time point, the pressure was higher at HSc compared with NS but was significantly different only at 1 month (P = .01). PGs were worn ≥12 hr/d 7 d/wk. PGs that apply 15 to 25 mm Hg pressure significantly improve HSc; however, immediately after fitting newly fabricated PGs, the average pressure was at the bottom of the recommended range and by 1 month was significantly below. Clinicians are likely underestimating the dosage required and the significant pressure loss within the first 2 months.

Reasons for Distress Among Burn Survivors at 6, 12, and 24 Months Postdischarge: A Burn Injury Model System Investigation

2018 ◽  
Vol 99 (7) ◽  
pp. 1311-1317 ◽  
Author(s):  
Shelley A. Wiechman ◽  
Kara McMullen ◽  
Gretchen J. Carrougher ◽  
Jame A. Fauerbach ◽  
Colleen M. Ryan ◽  
...  
Keyword(s):  
Burn Injury ◽  
Model System ◽  
Injury Model ◽  
Burn Survivors

118 The Clinical and Demographic Predictors Associated with Physical Function in Pediatric Burn Survivors: A Burn Model System National Database Study

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S78-S79
Author(s):  
Chiamaka J Ukoha ◽  
Oscar E Suman ◽  
Jeffrey C Schneider ◽  
Colleen M Ryan ◽  
Karen J Kowalske ◽  
...  
Keyword(s):  
Regression Model ◽  
Hospital Stay ◽  
Physical Function ◽  
Regression Coefficient ◽  
Demographic Factors ◽  
Model System ◽  
National Database ◽  
Patient Reported ◽  
Burn Survivors ◽  
The Mean

Abstract Introduction Burns are a common pediatric injury, and severe burns can interfere with a child’s physical function. Rehabilitation for these patients continues to evolve; however, little is known about how clinical and demographic factors affect long-term physical function outcomes. This study will evaluate the association between Patient Reported Outcome Measurement Information System-29 (PROMIS) physical function-mobility subscale scores (PF) and various clinical and demographic factors among pediatric burn survivors. Methods Data were collected from the Burn Model System National Database (1994–2020) and was compiled from five ABA verified burn centers. The data requested included pediatric self-report PROMIS PF scores assessed at 6 months post-burn. A linear regression model was performed with PF total score at 6 months as the dependent variable and total body surface area (TBSA) burned, age, sex, etiology of the burn, length hospital of stay (LOS), and race/ethnicity as independent variables. Results A total of 82 patients between the ages of 8–17 were included in the regression analysis. The mean physical function scores for the participants was 46.2 (SD=11.9), 20.0–57.1 with 50 (SD=10) being the average for the general population. The mean % TBSA burned was 37 (SD=19), 2–90. The regression model revealed an association (n=82; F=7.85; p&lt; 0.001; R2=0.2648) of PF to the predictors LOS (p &lt; 0.001; regression coefficient= -0.18) and White ethnicity compared to Hispanic (p&lt; 0.001; regression coefficient=8.89). Conclusions In this study, pediatric burn patients’ self-reported physical function was associated with ethnicity and hospital stay, with longer hospital stay and Hispanic ethnicity resulting in lower PF.

94 Agreement Between Proxy- and Self-Report PROMIS Scores in Pediatric Burn Survivors

2021 ◽  
Vol 42 (Supplement_1) ◽  
pp. S65-S65
Author(s):  
Dagmar Amtmann ◽  
Alyssa M Bamer ◽  
Kara McMullen ◽  
Barclay T Stewart ◽  
Lewis E Kazis ◽  
...  
Keyword(s):  
Peer Relationships ◽  
Effect Size ◽  
Short Form ◽  
Intraclass Correlation ◽  
Self Report ◽  
Pain Interference ◽  
Proxy Report ◽  
Factors Associated ◽  
Small Effect Size ◽  
Burn Survivors

Abstract Introduction Reporting by proxy is necessary when patients are not able to report their own experience, such as young children or those too sick to respond. PROMIS pediatric proxy-report item banks are a set of generic measures that facilitate comparisons across populations and studies. Our objectives were to (1) examine agreement in pediatric burn survivors between child self- and caregiver proxy-report on multiple PROMIS domains and (2) examine factors associated with differences between self- and proxy-reports. Methods Data were collected from children 8–17 years with moderate to severe burn injury and their respective caregivers between 6 months and 15 years after injury. The PROMIS-25 and Anger v1.0 short form were completed by pediatric burn participants. Caregivers completed either custom (depression, pain interference) or standard (Physical Function (PF) 8a, Peer 7a, Anger 5a) PROMIS proxy short forms. Self- and proxy-report scores were compared using Wilcoxon sign rank test, Cohen’s effect size, and intraclass correlation coefficients (ICC(2,1)) and by agreement across severity of symptoms based on recommended cutoffs. Regression analyses examined child- (self-report score, age, gender, and ethnicity) and proxy-related (relationship to child) factors associated with score differences. Results A total of 274 child-caregiver pairs completed the PROMIS measures. Mean child age was 13.0 (SD:3) years. Caregivers reported significantly worse scores than the child on PF, pain, and anger (all p≤0.01). Cohen’s d ranged from 0.05 (depression) to 0.25 (PF), with all domains except PF in the small effect size range (&lt; 0.2). Similarly, ICCs were all of moderate agreement and ranged from 0.51 (pain) to 0.69 (depression). The percentage of dyads in agreement by severity groups was high with only 5% (pain), 8% (PF, peer relationships), and 9% (depression, anger) of pairs discordant. Regression models indicated only higher self-report score was associated (all p&lt; 0.05) with greater differences across all domains, though female gender was also associated with greater differences on depression only. Conclusions This study provides support for the use of pediatric proxy PROMIS depression, PF, peer relationships, pain interference, and anger scales in pediatric burn patients. Although agreement was moderate to good, proxy report should only be considered when self-report is not possible or practical. Caregivers typically report slightly worse severity of symptoms than children across all domains.

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