From qualitative data to a measurement instrument: A clarification and elaboration of choices made in the development of the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS) 3.0.

PURPOSE: To clarify and elaborate on the choices that were made in the development of the Patient Scale of the Patient and Observer Scar Assessment Scale 3.0 (POSAS 3.0), based upon the rich information obtained from patients during focus groups and pilot tests. METHODS: The discussions described in this paper are a reflection of the focus group study and pilot tests that were conducted in order to develop the Patient Scale of the POSAS3.0. The focus groups took place in the Netherlands and Australia and included 45 participants. Pilot tests were performed with 15 participants in Australia, the Netherlands, and the United Kingdom. RESULTS: We discussed the selection, wording and merging of 17 included items. Additionally, the reason for exclusion of 23 characteristics are given. CONCLUSION: Based upon the unique and rich material of patient input obtained, two versions of the Patient Scale of the POSAS3.0 were developed: the Generic version, and the Linear scar version. The discussions and decisions taken during the development are informative for a good understanding of the POSAS 3.0 and are indispensable as a background for future translations and cross-cultural adaptations.

Development of the Patient Scale of the Patient and Observer Scar Assessment Scale (POSAS) 3.0: a qualitative study.

PURPOSE: The Patient and Observer Scar Assessment Scale (POSAS) is widely used for measurements of scar quality. This encompasses visual, tactile and sensory characteristics of the scar. The Patient Scale of previous POSAS versions was lacking input from patients. Therefore, the aim of this study was to develop the POSAS3.0, Patient Scale with involvement of adults patients with all scar types, complying with the highest clinimetric standards. METHODS: From February 2018 to April 2019, a series of six focus group interviews were performed in the Netherlands and Australia to identify scar quality characteristics that adults with scars consider to be important. All focus groups were transcribed, anonymized and analysed using a thematic analysis. Relevant characteristics were formulated into items, resulting in a Dutch and English version of the Patient Scale. These drafts were pilot tested in Australia, the Netherlands and the United Kingdom, and refined accordingly. RESULTS: A total of 21 relevant scar quality characteristics were identified during the focus groups. Two distinct versions of the POSAS3.0, Patient Scale were developed. The Generic version contains 16 items and can be used for all scar types, except linear scars. The Linear Scar version of the Patient Scale contains the same 16 items, with an extra item referring to the widening of scar margins. All included items are rated on a verbal rating scale with five response options. CONCLUSION: Two versions of the POSAS3.0 Patient Scale were developed. Further field tests are being performed to establish the measurement properties and scoring algorithm of the scales.

The Brisbane Burn Scar Impact Profile (child and young person version) for measuring health-related quality of life in children with burn scars: A longitudinal cohort study of reliability, validity and responsiveness.

BACKGROUND: Clinical practice benefits from the measurement of health-related quality of life (HRQoL) to reflect the impact of the disease and treatments from the patient's lived experience. The Brisbane Burn Scar Impact Profile (child and young person version, BBSIP8-18), developed in 2013, is a self-report measure of burn scar-specific HRQoL. The purpose of the study was to test reliability, validity and responsiveness of this measure for an evaluative purpose. METHODS: Young people aged 8-18 years with burn scarring or at probable risk of burn scarring (defined as 14 days or longer to re-epithelialize) were included in a prospective, longitudinal cohort study. Data was collected at a paediatric burn centre at baseline (when ≥85% of the total body surface area re- epithelialized), then 1-2 weeks and 1-month post-baseline. Participants completed measures of HRQoL (BBSIP8-18, Pediatric Quality of Life Inventory) and scar characteristics (Patient Observer Scar Assessment Scale) at each time-point. RESULTS: Sixty-five participants completed the baseline testing. Forty-nine participants completed testing at 1-2 weeks post-baseline and thirty-two at 1-month post-baseline. Internal consistency of item groups ranged from Cronbach's α 0.60 (frequency of sensory symptoms) to 0.90 (emotional reactions). All item groups expected to be stable had acceptable test-retest reliability (ICC = 0.71-0.83), except 'mobility' and 'friendships and social interaction' (ICC = 0.52 and 0.45). Construct validity was supported with 10 of 13 (77%) hypothesised correlations of change in the BBSIP8-18 items corresponding with changes in external criterion measures. The responsiveness of 8 out of 10 item groups tested against an external criterion was supported (AUC = 0.71-0.92). CONCLUSION: The BBSIP8-18 has acceptable reliability, validity and responsiveness supporting its use as an evaluative self-report measure of burn scar-specific HRQoL in the early post-acute phase after burn injury.

The longitudinal validity, reproducibility and responsiveness of the Brisbane Burn Scar Impact Profile (caregiver report for young children version) for measuring health-related quality of life in children with burn scars.

BACKGROUND: The measurement of health-related quality of life (HRQoL) provides information about the perceived burden of the health condition and treatments from a lived experience. The Brisbane Burn Scar Impact Profile (caregiver report for young children, BBSIP0-8), developed in 2013, is a proxy-report measure of burn scar-specific HRQoL. The aim of this study was to report its psychometric properties in line with an evaluative purpose. METHODS: Caregivers of children up to 8 years of age at risk of burn scarring were recruited into a prospective, longitudinal cohort study. Caregivers completed the BBSIP0-8, Pediatric Quality of Life Inventory and Patient Observer Scar Assessment Scale at baseline (approximately ≥85% of the total body surface area re-epithelialised), 1-2 weeks after baseline and 1-month after baseline. Psychometric properties measured included internal consistency, test-retest reliability, validity and responsiveness. RESULTS: Eighty-six caregivers of mostly male children (55%), of a median age (IQR) of 1 year, 10 months (2 years, 1 month) and total body surface area burn of 1.5% (3.0%) were recruited. Over one third of participants were grafted and 15% had contractures or skin tightness at baseline. Internal consistency of ten item groups ranged from 0.73 to 0.96. Hypothesised correlations of changes in the BBSIP0-8 items with changes in criterion measures supported longitudinal validity (ρ ranging from -0.73 to 0.68). The majority of item groups had acceptable reproducibility (ICC = 0.65-0.83). The responsiveness of five item groups was supported (AUC = 0.71-0.90). CONCLUSION: The psychometric properties tested support the use of the BBSIP0-8 as an evaluative measure of burn scar-related health-related quality of life for children aged below eight years in the early post-acute period of rehabilitation. Further investigation at longer time period after burn injury is indicated.

Towards a clinical and empirical definition of burn scarring: A template analysis using qualitative data.

OBJECTIVE: This study aimed to describe the nature, scope or meaning of the concept 'burn scar', from the perspective of adults and children with burn scarring, caregivers of children with burn scarring and health professionals who were considered experts in the treatment of burn scarring. The impact of the identified characteristics on burn scar health-related quality of life (HRQOL) was also examined. METHOD: Using a phenomenological qualitative approach, 43 transcripts from semi-structured interviews with people with burn scars (n=10 adults and n=11 children), their caregivers (n=9) and health professionals (n=13) were analyzed using template analysis. RESULTS: Ten characteristics of burn scars were identified by health professionals: 'stretchability', 'hardness', 'raised', 'thickness', 'surface area', 'scar sensitivity', 'scar surface appearance', 'hydration', 'fragility', and 'color'. However, 'thickness', 'scar surface area' and 'hydration' were not described by children with burn scars and 'scar surface area' was not described by adults with burn scars or caregivers. All groups (adults, children, caregivers and health professional) perceived that the burn scar characteristics of 'stretchability' and 'scar sensitivity' impacted upon all indicators of burn scar HRQOL. The burn scar characteristics of 'fragility', 'scar surface appearance' and 'color' were largely perceived by all groups to impact upon the emotional and physical indicators of burn scar HRQOL alone. CONCLUSIONS: This study identified there are differences in the burn scar characteristics considered important by health professionals and those characteristics that adult/child/caregivers perceived to impact on indicators of burn scar HRQOL. It is recommended that outcome measures of burn scarring include the burn scar characteristics of 'stretchability' and 'scar sensitivity' at a minimum. The inclusion of 'fragility', 'scar surface appearance' and 'color' should also be considered.

The reproducibility and clinical utility of the 3D camera for measuring scar height, with a protocol for administration.

BACKGROUND: This study aimed to determine the reproducibility and clinical utility of a 3D camera for measuring burn scar height in adults. METHODS: Participants from a larger prospective longitudinal study were included. Reproducibility data were collected using an immediate test-retest interval and a 1-2 week test-retest interval and included reliability and agreement. The LifeViz™ 3D camera was used to measure scar height. Reproducibility was tested using the Intraclass Correlation Coefficient (ICC), percentage agreement within 1 mm between test and retest, standard error of measurement, smallest detectable change (SDC) and Bland Altman limits of agreement. RESULTS: Burn scar images from 55 adult participants were included. Intra-rater reliability was acceptable using an immediate retest interval (maximum and minimum height ICC=0.85, 0.86 respectively). Agreement using an immediate retest interval was borderline acceptable (maximum and minimum height SDC=1.11, 0.69 respectively) to detect changes of close to 1 mm. Reproducibility was largely not acceptable using a 1-2 week test-retest interval (eg, maximum and minimum height ICC=0.34, 0.68 respectively; maximum and minimum height SDC=2.66, 1.16). The clinical utility of the camera was supported for scars over relatively flat areas and well-defined border margins. A protocol for administration of the camera was developed. CONCLUSION: The 3D camera appears capable of detecting gross changes or differences in scar height above the normal skin surface, in adults with scars over relatively flat areas and well-defined border margins. However, further testing of reproducibility using a shorter test-retest interval than 1-2 week retest is recommended to confirm the suitability of the device for measuring changes or differences in scar height.

Ultrasound is a reproducible and valid tool for measuring scar height in children with burn scars: A cross-sectional study of the psychometric properties and utility of the ultrasound and 3D camera.

OBJECTIVE: The aim of this study was to investigate the reproducibility and validity of measuring scar height in children using ultrasound and 3D camera. METHOD: Using a cross-sectional design, children with discrete burn scars were included. Reproducibility was tested using Intraclass Correlation Coefficient (ICC) for reliability, and percentage agreement within 1mm between test and re-test, standard error of measurement (SEM), smallest detectable change (SDC) and Bland Altman limits of agreement for agreement. Concurrent validity was tested using Spearman's rho for support of pre-specified hypotheses. RESULTS: Forty-nine participants (55 scars) were included. For ultrasound, test-retest and inter-rater reproducibility of scar thickness was acceptable for scarred skin (ICC=0.95, SDC=0.06cm and ICC=0.82, SDC=0.14cm). The ultrasound picked up changes of <1mm. Inter-rater reproducibility of maximal scar height using the 3D camera was acceptable (ICC=0.73, SDC=0.55cm). Construct validity of the ultrasound was supported with a strong correlation between the measure of scar thickness and observer ratings of thickness using the POSAS (ρ=0.61). Construct validity of the 3D camera was also supported with a moderate correlation (ρ=0.37) with the same measure using maximal scar height. CONCLUSIONS: The ultrasound is capable of detecting smaller changes or differences in scar thickness than the 3D camera, in children with burn scars. However agreement as part of reproducibility was lower than expected between raters for the ultrasound. Improving the accuracy of scar relocation may go some way to address agreement.

Inaccurate, inadequate and inconsistent: A content analysis of burn first aid information online.

OBJECTIVE: With the popularity of the Internet as a primary source of health-related information, the aim of this website content analysis was to assess the accuracy and quality of burn first aid information available on the Internet. METHODS: Using the search term 'burn first aid' in four popular search engines, the first 10 websites from each search engine were recorded. From a total of 40 websites recorded, 14 websites were evaluated after removing duplicates. Websites were assessed on content accuracy by four independent reviewers with checks conducted on inter-rater reliability. Website quality was recorded based on Health on the Net Code of Conduct (HONcode) principles. RESULTS: Country of origin for the 14 websites was the US (7), Australia (6), and New Zealand (1). The mean content accuracy score was 5.6 out of 10. The mean website quality score was 6.6 out of 12. Australasian websites scored lower for quality but higher for accuracy. The US websites scored higher for quality than accuracy. Website usability and accuracy in a crisis situation were also assessed. The median crisis usability score was 3 out of five, and the median crisis accuracy score was 3.5 out of five. CONCLUSIONS: The inaccurate and inconsistent burn first aid treatments that appear online are reflected in the often-incorrect burn first aid treatments seen in patients attending emergency departments. Global consistency in burn first aid information is needed to avoid confusion by members of the public.

Measuring functional outcome in paediatric patients with burns: methodological considerations.

Methodological criticisms of research undertaken in the area of paediatric burns are widespread. To date, quasi-experimental research designs have most frequently been used to examine the impact of impairments such as scarring and reduced range of motion on functional outcomes. Predominantly, these studies have utilised a narrow definition of functioning (e.g. school attendance) to determine a child's level of participation in activities post-burn injury. Until recently, there had been little attempt to develop and/or test a theoretical model of functional outcome with these children. Using a conceptual model of functional outcome based on the International Classification of Functioning, Disability and Health, this review paper outlines the current state of the research literature and presents explanatory case study methodology as an alternative research design to further advance the study of functional outcome post-burn injury.

What influences the functional outcome of children at 6 months post-burn?

The contribution of demographic, injury, pre-morbid, and parent factors to a child's functional outcome at 6 months post-burn injury was examined. Sixty-eight children, aged 5-14 years with percent total body surface area (%TBSA) burns ranging from <1 to 35%, and their primary caregivers participated in the study. It was expected that pre-morbid and parent factors but not injury factors would have a significant impact on the functional outcome of children at 6 months post-burn. Injury factors included the percent of total body surface area burned, number of operative procedures, and source of the burn (i.e. flame burn, scald burn). Pre-morbid child factors included the presence or absence of behaviour problems, psychological or psychiatric problems, learning difficulty or developmental delay. Parent factors included anxiety, depression, coping processes, and social support. Whilst investigating the contribution of these factors to functional outcome, the effect of demographic factors (i.e. age, gender, family socioeconomic status, and the number of previous hospitalizations) was controlled for and investigated. Analyses included two hierarchical multiple regression analyses that supported the expected results. R was significantly different from zero at the end of each step in both hierarchical regression analyses, indicating that each group of factors added significantly to the fit of the model. After step 4 in the final regression model with all independent variables in the equation, R=0.85, F(18,49)=6.89, P<0.001.

Development, reliability, and concurrent validity of the modified inventory of potential reconstructive needs.

Documentation of burn sequelae can be a difficult and time-consuming task. To date a reliable and systematic format for recording postburn trauma is lacking. The purpose of this research was two-fold: first, to develop a Modified Inventory of Potential Reconstructive Needs from the original Inventory of Potential Reconstructive Needs to allow methodical documentation of functional and cosmetic burn sequelae in all body surface areas of children with burns and, second, to establish interrater reliability and concurrent validity of the instrument, thus allowing its clinical application. Two raters scored the Modified Inventory of Potential Reconstructive Needs on 41 children with a range of burns types and severity. Excellent interrater reliability was demonstrated for both total (intraclass correlation coefficient = 0.996) and subsection inventory scores. Concurrent validity was also established with total scores showing strong positive correlations (0.73-0.76) with three indicators of burn severity. These findings provide initial support for the tool's clinical applicability, particularly in relation to rehabilitative planning and documentation.

The functional outcome of children after a burn injury: a pilot study.

Assessment of functional outcome can be used as a measure of the effectiveness of intervention during recovery from a burn injury. This pilot study identifies the factors that are likely to be most important for determining standardized functional outcome measures for children after a burn injury; it highlights the contribution of these factors to variations in children's postburn outcomes. A focus group of 8 parents and a self-report questionnaire administered to 12 children and 13 parents were the means of obtaining information for this exploratory study. Itching was found to be one of the primary impairments that contributed to reduced functional outcome during skin healing after a burn injury. The activities of children who had been burned that were most frequently affected by the injury (as reported by parents) were schoolwork and sports; these were closely followed by sleeping, playing with other children, and unliked activities. Least affected activities were enjoying the family, eating, seeing friends, watching television, and bathing or showering. Eighty-five percent of parents reported at least some level of interference with the listed daily activities. Burn injuries are likely to cause interference with several aspects of a patient's daily life. As a result, families require ongoing support and monitoring. Further research should longitudinally compare the performance of children who have been burned with other children and adolescents.

Postburn dyspigmentation: its assessment, management, and relationship to scarring--a review of the literature.

Dyspigmentation often arises after deep partial- or full-thickness burns, and assessment of postburn scarring traditionally includes pigmentation. However, the relationship between dyspigmentation and scarring remains unclear. The physiologic basis of dyspigmentation has often been disregarded, and in pathologic states, its origin has been assumed to be in the epidermal melanin. Greater understanding of dyspigmentation among clinicians is required to increase knowledge and accuracy of assessment. This article aims to review the physiologic basis of pigmentation, and address the assessment, preventative management, and treatment options for postburn dyspigmentation.