The Quality of life and Psychosocial Wellbeing of Burn Survivors: A Systematic Review
This study has been conducted to evaluate factors that affect the quality of life (QoL) of burn survivors in relation to long-term recovery and psychosocial wellbeing. These factors include sexual function, cultural variations, family life, and education. This research has been performed as a systematic review to assess the available research on evaluating health-related quality of life (HRQoL) and psychological outcomes in burn survivors.
Articles were identified using searches in Embase, PubMed, PsychInfo, and Web of Science databases from 2008-2018, which were screened against inclusion and exclusion criteria. A systematic review of the literature was conducted by having each study reviewed by two independent reviewers. Data was extracted using a standardized protocol and a quality assessment performed using the Effective Public Health Practice Project (EPHPP).
Twelve studies were deemed suitable to include as per inclusion criteria. The Burn Specific Health Scale (BSHS) was the most commonly used outcome-measure tool to evaluate HRQoL. QoL was reduced in patients with burns in comparison to the general population. However, longitudinal studies found that it improved over time. In addition, post-traumatic stress disorder (PTSD) was measured most frequently with three studies out of twelve studies providing data on this. The most common tool used to assess this was the Impact of Event Scale-Revised (IES-R). PTSD, anxiety, and depression were the most commonly reported psychological morbidities relating to burn injuries that influenced the QoL of individuals.
The most profound finding was the lack of data available on long-term outcomes of health-related QoL. However, education, and family life were utterly neglected as per a limited number of studies that assessed family members as carers for victims and their QoL and possible support needs. There was a significant degree of variation in the choice of outcome-measure tools used in the studies identified, making a comparison of quantitative data more difficult. It can be concluded that the most neglected aspects of QoL affecting long-term outcomes are education, and the family life of burn survivors.
Introduction & Background
“God gave us the gift of life; it is up to us to give ourselves the gift of living well”.
Burn injuries are a type of taboo in some parts of the world, and they carry multiple negative facets such as emotional/psychological distress, a toll on education, work, and family life, and sexual dysfunction, as well as visible disfigurement. It is a major cause of injuries and deaths. More than 300,000 people are killed by fires around the world annually, as stated in 2004 by the World Health Organisation (WHO) [1-3]. Furthermore, it is heavily linked to the cultural practices with respect to exposure to liquids and fire, sub-standard electrical wiring, and cooking in general in low-income countries where preventive interventions are limited or unavailable [4-7]. The population groups generally at the highest risk for burn injuries are women in the Middle East and Southeast Asia .
In 2008, the WHO reported that 180,000 people succumbed to burn injuries. The majority of these were from low-middle income including two-thirds from Africa and Southeast Asia . The mortality rate in Southeast Asia has been reported to be 11.6 deaths per 100,000 population per year. In Africa, it has been reported to be 6.1 deaths per 100,000 people per year, and in the Eastern Mediterranean, 6.4 deaths per 100,000 per year . In addition, in some places in the world, risk factors such as guilt, fear, embarrassment, agoraphobia, and social phobia prohibit survivors of burns injuries from participating fully in daily-life activities [10,11]. Therefore, it is of vital importance to address these issues with the aim to improve long-term outcomes of quality of life (QoL) for those that have suffered burns injuries .
Quality of Life (QoL) can be described as one's perception of the fulfilment of their life within their given culture and set of values in which they live. It also takes into account their personal perspective of goals, expectations, and standards for life, and this is irrespective of health status. It can therefore be said that QoL consists of a number of facets which include health, physical and mental well-being , as well as financial well-being, work, personal and social relationships, satisfaction in life, involvement in social activities and leisure, learning and education, achieving personal goals, and personal development [14,15]. Psychosocial risk factors drastically impair post-burn QoL and bursting recovery [16,17]. QoL of burn survivors have so many domains to consider and explore further, but the crucial parts of this are family life, education including sexuality , which has not been well researched to date.
Health-related quality of life (HRQoL) is the view of the quality of life from a medical or health-related viewpoint and evaluates the impact of a person's health status . One study assessed the comparison between HRQoL and health outcomes in working versus non-working individuals and specified that those who did not work demonstrated low HRQoL as well as poorer trauma-related physical and psychological health . Another study concluded that future research should consider HRQoL more seriously .
Subsequently, more recent studies have focused on QoL. However, very limited work has been and done and published on burns-specific HRQoL. A study demonstrated that while 75 systematic reviews have been published on split-skin wounds, but HRQoL has remained neglected .
There is no standard procedure for the assessment of HRQoL. Some HRQoL instruments with diverse properties have always been used in the evaluation of the quality of life of burn patients . Some of the generic methods have been extensively utilized and widely authenticated in medical settings and by individual population researchers. However, their length repeatedly makes them unrealistic to use, mainly when an amalgamation with a disease-explicit instrument is desirable .
The objective of this research is to look at the health-related quality of life and its contributory elements among patients with burn injuries after recovery. In addition, emphasis will be placed on psychosocial factors, including educational, family life, and sexual limitations where possible. This study will try to explore these overlooked issues in an exhaustive manner.
A systematic literature review performed in line with Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA)  see fig 1.
Data Sources and Search Strategy
Used PICOS approach (participants, interventions, comparators, outcomes, and study design) to construct title. A literature search was performed using established e-databases and a manual search. The databases included PubMed (all years until 2008), Embase (all years till 2008), Web of Science (all years till 2008) and PsychInfo (all years till 2008).
Searches did not produce any relevant studies prior to 2008, therefore finalised searches were limited from [2008 to 2018]. To narrow down further, search MeSh terms were used to extract more relevant data (appendix 1: search history). Inclusion and exclusion criteria: inclusion and exclusion criteria were applied. The studies identified were reviewed and screened by two independent reviewers to assess if they met the specified inclusion criteria. The inclusion criteria were that study samples had to be age 18, or above, this was not gender-specific, from any country, patient demographic, studies that assessed burn patients been hospitalised at a health facility following their initial burn injury, studies that assessed QoL, HRQoL, sexuality, education, returning to work, family life and psychosocial wellbeing, specific exclusion criteria were any studies that did not assess or report quality of life as a utility value. In addition, any studies conducting hospital admissions on one occasion alone were excluded.
Data were extracted regarding patient demographic (e.g. age, gender, employment, comorbidities), study characteristics (such as design, location and duration), burn characteristics (e.g. type, sites, complications), quality of life values using tools that produced utility scores, psychosocial wellbeing assessment, effect on education and family life. Studies were peer reviewed with full text articles, examining magnitudes of quality of life in burn survivors in the English language. Studies assessed in multidimensional aspects of psychosocial factors; however, all were required to have burn specific quality of life after surviving as an outcome measure (Table 2 below).
No ethical approval was required for this systematic review however studies included were assessed for whether they obtained ethical approval. The suggestion of the Systematic Literature Review to carry out the measurements quality of life permits the contrasts between the obtained results currently and the previous ones. This implies that it allows the identification of the variation in more than a single measure over a specified period.
The quality of all included studies was scored using the Effective Public Health Practice Project (EPHPP) tool for quantitative studies which consisted of evaluating selection bias, study design, confounders, blinding, data collection method, withdraws and dropouts and where applicable intervention integrity and analyses (Please see Fig 2 ).
Selection of studies
The initial search in relation to quality of life generated 487 results and hand searches found 20 studies. After removing duplicates, 255 studies remained from the primary search. After assessing inclusion and exclusion criteria, 12 studies remained which were included in this systematic review.
The studies and results which were transcribed from the other studies were later studied by the use of the EPHPP content investigation. This was done to see the sights of the content and the significance of the texts. Moreover, they were also analyzed to identify the patterns which were involved in each study according to the chosen framework. The study was done to get a sense of the content . The understanding of the text and the content was then discussed in connection with the aim and objective.
The analysis was carefully contacted until final results and deductions were made based on the findings. To intensify the consistency of the investigation, the results were re-read, and the categories and the subcategories were compared and confirmed against the entire collection of articles that were included in the research.
The results extracted were then analysed to make a quality analysis amongst all articles of prior research used. The crucial point in this was to provide a consistent comparison. This analysis assisted in the final discussions and conclusion.
All twelve included studies [27-38] showed a very high risk of bias. The percentage of participants was 60 to 100%; two studies showed outcomes moderate, and the rest often showed strong. In the study design, one study RCT (Randomized Control Trial) showed strong while the rest of the eleven showed moderate. One study was strong in regards to confounders and blinding, and the rest were rated as moderate. Within the data collection method, all studies scored strong, domain for withdrawals scored strongly as all individuals remained within the limit. The overall global score was strong, as illustrated in Fig 2 and in further depth individually for each study in Fig 3 (graph 1 see below).
All studies measured quality of life; however, only one study measured it in comparison to a normal population sample . This is a vital limitation as the quality of life deterioration cannot be evaluated in the absence of a control group.
Van Loey et al. 2011  used the EQ-5D index and found that in the normal population, the quality of life mean was o.88, whereas in burn survivors mean the quality of life value was 0.59, 3 weeks following injury. Bosman et al. 2015  found that over long-term follow-up, over three-time points, quality of life did improve. At T1 (time point one) the quality of life was 0.56, whereas at T3 (time point 3), it was 0.87. Similar findings were reported by Yoder et al. 2017 , Oster and Sveen 2015 , Moi et al. 2016 , as illustrated in table 2. Palmu et al. 2015  assessed return to work patients but not the quality of life; therefore this study was excluded.
Of the twelve studies, only one study compared the quality of life of burn survivors to that of the general population , and only one study considered sexuality as part of the health-related quality of life evaluation .
In the study that examined a comparison between HRQoL and health outcomes in individuals who were working versus non-working, it was suggested that those who worked had better HRQoL in addition to trauma-related psychological and physical health . Studies as such allow for a view of comparison not only amongst burn survivors and the general population, but also within the community of survivors. However, none of the studies evaluated the role of education and family life as an aspect of quality of life.
A small number of studies measured quality of life over more than one-time point to illustrate improvement over time [33,34,35,36,37,39]. In one study, individuals were scanned through 2-7 years to assess their pain levels and the interference it held over their daily lives . In this particular study, individuals reported to have pain for up to 7 years after their incident and did show lower HRQoL. Although a small number of studies measured individuals for more than one-time point, such studies are crucial to better understand HRQoL of individuals.
Only one study was an RCT , and therefore it is difficult to conclude which specific interventions would be beneficial to improve the quality of life of burn survivors over time.
This review looked at the effects of burn injuries on psychosocial, work, education, sex, and family life. Most studies were conducted in Europe. Included studies spanned ten countries; India, Iran, UK, Australia (2 studies), Sweden (3 studies), South Korea, the Netherlands (2 studies), Norway, Finland, and the US. There were inconsistencies in reporting of key data such as TBSA, gender %, age, and type of burn injury. One study was an RCT, one descriptive cohort, and the rest were all prospective, longitudinal cohort studies. Sample sizes were variable in most studies; however, all were below a sample number of 180 burn patients. All studies did not specify the distribution of gender; however, the majority highlighted more males in comparison to females. Six studies did not give TBSA%, and five studies did not mention types of burn injuries out of 12 studies. (Fig 4 below).
The sample sizes of the studies included were comparably less than some other systematic reviews in this area of study. Furthermore, the sampling that was carried out was entirely nonrandomized, primarily because the findings of the study may only be demonstrative to the given study populations. In addition to that, it cannot be generalized to the whole community at large. Longitudinal studies which involve greater samples, designated by the exact methods of sampling, could be required additionally for better assessment among these patients, Moreover, studies recommended for sexuality and education.
Twelve studies were reviewed to assess the quality of life in burn victims in relation to psychosocial wellbeing and long-term recovery. The results of this paper provide support to the utilization of the generic instruments EQ-5D together with specific burn tools to incorporate into the initial assessment and long-term follow-up assessments over the course of burn injury management. This is to provide interventions that will aid patients in returning to their pre-injury quality of life as closely as possible. This review has reinforced that there remains a significant gap in research and methods of improving long-term outcomes of survivors of burn injuries. Out of all twelve studies looking at HRQoL, only one was an RCT that implemented self-care techniques in the intervention group. This highlights that there is a lack of work being conducted in determining the quality of life-improving interventions in long-term care of burn patients. Nine of the studies that were cohort studies measured more than one time-point, which from a long-term outcome perspective is useful; however, the number of studies identified that look at the quality of life in depth are limited in numbers and also in sample size. It is necessary to recommend to every person concerned to provide support either economically, socially, or even psychologically to the burn patients to ensure they are leading a satisfying quality life.
The rehabilitation programs offered should offer support and advice ranging from a return to work, back to education, and providing active participation in the community activities, offering support and advice for dealing with issues relating to sexuality. Therefore, it is important that this is addressed as part of a structured and holistic approach to developing a long-term treatment plan. The overall follow-up ought to be carried out by needs of various degrees of burn among the victims. This should be conducted 2 to 7 years after the accident. In addition to that, the risk factors for worsening of quality of life following burn injuries and the long-term care required to address these factors should be recognised and thoroughly explored by any individual who is looking to contribute towards the improvement of quality of life after sustaining burn injuries through research or is involved directly in patient care through providing clinical practice.
Health-Related Quality Of Life After Burn
One of the significant findings was that the information that was obtained before or even precisely at twelve months post burn would partially predict the long-term HRQoL. One study identified that if the burn patient is coping well following injury and he or she does not have PTSD ( Post Traumatic Stress Disorder) at precisely twelve months then this patient group is more likely to report better scores of quality of life using the EQ-VAS at twelve months, and even better EQ-VAS scores two to seven years post-injury burn. A small number of researches that has been published so far only permits conclusions which are limited regarding the variables that forecast the HRQoL several years after the burn injury. These research papers have assessed the HRQoL at just one to two time points or have had a cross-sectional design. Nonetheless, recent research has indicated that the deleterious consequences of early PTSD on the HRQoL after a burn accident were significantly decreased by time over two consecutive years [40,41] .The reason for this is that the PTSD at twelve months was not linked to the HRQoL at follow up .
In this paper, the elucidated variance of the long-term HRQoL primarily amplified significantly when including the simultaneous variable in the analysis of the regression. Currently having an element or even a substance utilization ailment and having daily pain were linked to the HRQoL. In the studies that were done previously, it was proved that the existing self-reported psychological disorder or even experiencing some pain was mainly linked to the poor outcomes of the HRQoL  . The other was the consequence of being unemployed or not being given an opportunity to go back to ones working station after he or she has been involved in a burn injury [41,44] . The other researchers have proved that mental illnesses(pre-injury as well as post-injury e.g. PTSD, GAD, depression) have a great impact on HRQoL. As a result of this, the effect of mental illnesses on the HRQoL, assessed by the EQ-5D (Economical evaluation tool to assess 5 dimensions of quality of life), was considerable [45,46,47, 48] .
Sexuality, family life and education
Only one study was identified in this review relating to burns and sexuality, highlighting the effect of burn injuries on sexuality and sexual function, which contributes to the overall quality of life of an individual. The study found that there was a significant correlation between the severity of burn injury and effect on sexuality over a follow-up period of 6 months to 7 years. In their study, they found that age was not a contributing factor, however this is inconsistent with previous studies, which did find that older age with burn injuries was associated with a greater reduction in sexual function. It was found that although there have been a number of studies assessing sexual function, they did not measure the quality of life as part of their assessment, and therefore, they were not included in this systematic review .
Another dimension of reviewing the impact of burn injuries would be to assess the effect on education. Although there are a few studies published on education, they have been published on a paediatric population as opposed to the adult population and therefore have not been discussed in this review. However, it is important to assess the effect of burn injuries on adult education, for example, university education, work-related training, and courses, and with this, the time missed in employment and how these factors can also contribute to a reduced quality of life .
In terms of family life, another lack of studies available is the aspect of family life and its impact on quality of life in burns. This is noted as other areas of medicine highlight that a positive impact of family life is that it can aid in the improvement of quality of life in other disease processes. A study was identified that highlighted that burn injuries not only affect the quality of life of the injured patient but also can impact the quality of life of primary caregivers, most often a family member . This is an interesting area that has yet been neglected and should also be researched further to identify areas for not only improving the quality of life of those that have directly suffered a burn injury but all those that also provide care for that person.
No competing interests
This study was not financially supported by anyone.
The primary target of this paper was to find how those patients that have been involved in burn accidents may be able to be rehabilitated and to have a quality of life as close as possible to the quality of life prior to sustaining the injury. Rehabilitation is required to begin as early as possible in the course of acute, specialist care, and measures like occupational therapy and physiotherapy to permit the burn patient to regain his or her functional capability to the maximum extent possible.
A limitation of this review, therefore, is the small number of studies along with their sample sizes as well as the lack of randomised controlled trials carried out in this area of study. A meta-analysis or pooled analysis of study results could not be conducted because the studies were heterogeneous in terms of outcome measures. After the study has been completed, recommendations are that there should always be a high standard of care for patients with burn injuries. Moreover, education and personal life are neglected aspects, to maintain quality of life of burn survivors these neglected aspects need more attention from future researchers.
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