ReviewA systematic review of patient reported outcome measures (PROMs) used in child and adolescent burn research
Introduction
Around 52,200 children and adolescents suffer a burn in the UK each year [1]. Historically such injuries have resulted in high mortality rates, however with advances in medical and surgical treatment, an increasing number of children and adolescents are living with their injuries. Irrespective of a person's age at the time of injury, a burn can have a significant psychosocial impact, both for patients and the family members supporting them. Those affected can struggle with coming to terms with the traumatic event that caused their injuries, while changes in physical appearance, loss of independence, pain and restricted physical abilities can also be hard to cope with [2].
Late childhood and adolescence can be a challenging time, during which most young people experience physical, psychological and social changes. The stress of experiencing a burn and associated treatment during these developmental stages can add further pressure [3], increasing the likelihood of key developmental processes being disrupted [4]. A recent review found that a considerable proportion of young adults burnt as children still experienced anxiety and affective disorders in adulthood [4]. It is therefore important to identify the needs of children and adolescents with burns, in order to ensure that they receive the most appropriate support, with a view to reducing the likelihood of them experiencing difficulties later on.
The National Burn Care Review (2001) [5] raised awareness of the need for improvements in the provision of care for people affected by burns. As well as highlighting the need for routine audits of mortality and morbidity rates and surgical outcomes, the review noted that a systematic assessment of patients’ experiences of their care, treatment, scarring and psychosocial functioning after burns was lacking. The review emphasised that the development of new patient reported outcome measures for this population was a priority. Historically patient needs have been identified through the use of clinician reported measures; however these might miss key aspects of the patient experience. Patient-reported outcome measures (PROMs) are preferable, as unlike clinician reported measures, they provide information about patient experiences and satisfaction with care [6].
PROMs are clearly needed in order to appropriately measure outcomes in paediatric and adolescent burn care. However, careful attention must be given to the development and implementation of these measures. A recent review of the psychosocial consequences of burn scars highlighted the lack of PROMs that have been validated with burns patients [7]. Although PROMS may investigate relevant patient experiences, their reliability (e.g. ability to yield consistent scores over time), validity (e.g. ability to measure what it intends to measure) and responsiveness (e.g. capacity to identify changes in scores over time) cannot be assumed without their psychometric qualities being formally tested with child and adolescent burn patients [8].
When PROMS are used by clinicians and researchers in this and related fields, there has been a tendency to use generic (rather than condition specific) measures to assess patient needs. Although generic PROMs are useful for identifying general health outcomes, they do not capture data relating to experiences that are specific to a particular patient population–in this case, paediatric and adolescent burns patients, and may lack the sensitivity to identify changes resulting from treatment. Rumsey and Harcourt [9] have also argued that there is a need to develop psychometrically robust instruments that can be used to evaluate the psychosocial adjustment of children with visible differences such as burns.
Whilst a number of reviews have summarised the types of outcome measures in research focussing on adults with burns [10], [11], [12]; none of these reviews have assessed the psychometric qualities of these outcome measures and little attention has been given to outcome measures used in paediatric burn research. Van Baar et al. [13] reviewed the functional consequences of experiencing a burn in adult and paediatric burn care. Although this review included information about the types of measures used in the studies, the psychometric qualities of the measures were not assessed in relation to paediatric burn patients. Similarly Lawrence et al.’s review [7] did not assess or report the psychometric quality of the measures used in the studies included in their review. A more recent systematic review of burn scar rating scales assessed the validity, reliability, responsiveness, interpretability and feasibility of these measures [14]. However the findings relate only to scar assessment; this is only one element of burn outcome. In addition, the majority of the scales included in this review were objective ratings, with only the Patient and Observer Scale Assessment Scale (POSAS) [15] providing subjective ratings by patients themselves.
In order to provide essential information to underpin the future choice of PROMs by researchers and clinicians working with children and young people affected by burns, the purpose of this review was firstly, to identify PROMs currently being used in paediatric and adolescent burn research to assess health and well-being (e.g. anxiety, depression, pain, post-traumatic stress disorder, mobility) and secondly, to conduct quality assessments to identify the psychometric properties of these measures.
Section snippets
Methods
The protocol for this review was accepted on the PROSPERO systematic review database (http://www.crd.york.ac.uk/prospero) on 8th November 2013. This review is reported using the PRISMA checklist for reporting systematic reviews [16] and guidance published by the Cochrane Collaboration [17].
Study selection
Fig. 1 shows the flow chart of the data screening process. A total of 6250 articles were identified. The first author (CG) screened the articles by applying the inclusion/exclusion criteria. Articles were excluded for the following reasons: duplicates (n = 1381), irrelevant (n = 1994), not burn patients/animals (n = 625), no PROM used/no patient data reported (n = 1605), PROM not validated (n = 11) and articles published before 2001 (n = 197).
Of the 437 articles that remained, articles were screened by CG
Discussion
The current study aimed to identify PROMs that have been used in paediatric and adolescent burn care research and to assess their psychometric properties for their use with these patient groups. An extensive systematic review identified that a variety of PROMs have been used to assess a range of outcomes in this population. The majority of the reviewed PROMs were generic rather than burns-specific, and covered a broad spectrum of psychological and physical health domains including social
Conclusions
Although a variety of different PROMs have been used with child and adolescent burn patients, only three have some level of psychometric evidence derived from this population. Additionally, these three PROMs lack evidence of their responsiveness and thus it is not clear how effective they are at identifying clinical change in this group of patients.
Generic outcome measures are unlikely to address the specific issues commonly experienced by child and adolescent burn patients and may not have the
Conflict of interest statement
There is no conflict of interest to report by any of the authors.
Acknowledgements
This study was funded by the Restore Burn and Wound Research Charity (Registered Charity No 1003899) as part of a programme of research funded by Restore and Dan's Fund for Burns (Registered Charity No. 1098720).
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Australian health professionals’ perspectives of psychosocial adjustment to visible differences: A qualitative analysis of pediatric populations
2020, Body ImageCitation Excerpt :Instead, there is high variability of constructs and subsequent measurement tools being used to assess the psychological wellbeing of CYP with visible differences (Rumsey & Harcourt, 2012). For example, up to 40 different measures evaluate a child’s psychosocial adjustment and/or quality of life across different appearance-related sub specialities (Griffiths et al., 2015; Klassen et al., 2012). Further complication arises when researchers assess different dimensions of the same construct (Szabo, Ferris, Urso, Aballay, & Duncan, 2017).
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
2019, BurnsCitation Excerpt :The Scientific Advisory Committee of the Medical Outcomes Trust proposes three stages to the development of PROMs, commencing with a conceptual model and generation of items (from literature review, expert opinion and qualitative interviews with patients) through to larger-scale psychometric testing of acceptability, reliability, validity and responsiveness [15]. The Burns Outcomes Questionnaire (BOQ0–5 [16] and BOQ5–18 [17], administered to parents of children and adolescents with burns, are currently the most frequently applied burn-specific measure of health outcomes [13]. These measures, with items generated initially from a review of existing scales and expert opinion, take into account normal expected growth for physical and mental development through the use of age specific reference groups [16,18,19].
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
2019, BurnsCitation Excerpt :The items groups of ‘mobility’ and ‘friendship and social interaction’ were less reliable than expected (ICC = 0.52 and 0.45 respectively). These reliability coefficients may have been dampened by low sample variability [48], as evidenced by a high rate of agreement for paired observations for a number of individual items within those groups. Also, the inclusion of participants with a probable risk of burn scarring and completion of baseline data when burns were 85% re-epithelialized is likely to have impacted upon these findings for mobility, which may in turn have impacted socialisation secondary to not attending school (for example).