Patients’ perspectives on quality of life after burn
Introduction
An important aim of the treatment of burn survivors is to keep or attain a favourable quality of life (QOL). Defining QOL after a burn is complex because of its multifactorial nature as virtually all organs can be affected [1], [2], and because of the heterogeneity of the population in terms of injury severity, age, socio-economic background and its impact on all domains of physical, psychological and social functioning [3]. Currently, QOL after burns is measured using generic and burn-specific QOL questionnaires. These existing instruments are useful in research to examine outcomes on group level and for comparisons in international studies [4], [5], [6], and in clinical practice for rapid assessment and to monitor improvement [7]. However, which components define QOL following burns area topic of debate [3], [8]. Studies using the International Classification of Functioning Disabilities and Health framework point to gaps in the extant literature [4], [5], [8].
Several studies emphasize different elements of QOL. From the professionals’ perspective, Falder et al. present a conceptual framework comprising seven core domains: “skin, neuromuscular function, sensory and pain, psychological function, physical role function, community participation, and perceived QOL” [3]. Qualitative studies, that have the advantage to get an in-depth assessment of a phenomenon and make the patient’s voice heard, point to a broader range of both negative and positive outcomes after burns. These, for example, include skin problems, fatigue, negative social interaction, existential and sexual problems, personal growth, self-esteem, empathy, gratitude, identity, and new relationships [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19] as well as sensory symptoms, impact of burn scar interventions, impact of burn scar symptoms, personal factors and change over time [16]. This shows some discrepancy between the professional’s point of view and the patient’s perspective and emphasizes the additional value of qualitative studies that echo the patient’s voice, particularly when health care needs are to be addressed.
Modern definitions of QOL do not only reflect a static outcome, but also indicate one’s ability to adapt and to self-manage physical, psychological, and social challenges of life [20]. To get insight in these outcomes and processes, it is valuable to obtain an ideosyncratic, in-depth assessment of an individual. This broad assessment could include problems that only apply to a small subgroup of patients, particular issues that are sensitive or emotional, and ways of managing QOL issues. In clinical practice, it could for instance be used in shared decision making to support self-management or to offer tailored care. To reach this aim, a comprehensive understanding of positive and negative QOL components is needed.
To further inform clinical practice, there is a need to better understand the whole spectrum of QOL, particularly from the perspective of individual patients. Concept mapping is an appropriate technique to elucidate an encompassing conceptual representation of QOL. It results in an interpretable, representative and structured pictorial view of ideas and concepts and how these are interrelated. In contrast to factor analysis, it does not reduce the number of concepts that is represented by latent factors reflecting consistent individual differences, but instead it organizes concepts by their meaning in a hierarchical map. This gives insight into target population perspectives, and provides a foundation for analytical and clinical choices [21]. Starting with interviews with burn survivors can basically help to understand what this concept means for them and can reveal the different components of QOL of interest to these patients. Subsequent sorting of these components by patients allows to group the qualitative information into interpretable domains. This can form the basis for the development of an in-depth assessment, or tailored screening instrument, to inform clinical practice as patients will differ in their need for (type of) treatment and support to help them maintain or restore their QOL.
The aim of this study was to obtain a comprehensive overview of domains of burn-related QOL including (in)capacities to self-manage QOL, by using patients’ views in a bottom-up approach. Specific emphasis was placed on including relatively uncommon problem areas that may be overlooked on group-level but are of notice to individuals.
Section snippets
Methods
The study was conducted according to the principles of the Declaration of Helsinki (revision, Fortaleza, Brazil, 2013). The Institutional Review Board of the Faculty of Social and Behavioural Sciences of Utrecht University reviewed the study and concluded that the study could be done without being subjected to review according the Dutch Medical Research Involving Human Subjects Act, because the study did neither involve a high load or risk for the participants nor medical acts (29/11/2012). The
Statement selection
From the interviews 207 statements reflecting aspects of QOL were selected. This number was reduced to 108 statements because they were ambiguous, not relevant or showed overlap with another statement. These 108 statements were pilot tested and subsequently 9 statements were removed or combined with another statement. The final set included 99 statements (see Appendix A).
Participants
Twenty-six participants performed the card-sorting task. Two of the 26 participants were excluded from the hierarchical
Discussion
The purpose of this study was to conceptualize burn-related QOL from the patient’s perspective in order to facilitate an idiosyncratic assessment that can inform clinical care. This study resulted in a hierarchical structure of burn-related QOL showing a core distinction between vulnerability or barriers and resilience or facilitators of burn-related QOL. Vulnerability comprised a broad variation of aspects grouped into 13 meaningful subdomains clustered into five domains, i.e., psychological
Conclusion
The conceptualisation of burn-related QOL from the patient’s perspective comprised a variety of vulnerability and resilience factors which provides a fresh basis for a screening instrument in clinical practice. It revealed under-addressed topics such as cognitive problems, fatigue and intimate and sexual anxiety, that can inform the research agenda.
Conflict of interest
The authors have declared that there a no conflicts of interest.
Acknowledgements
The Dutch Burns Foundation financially supported this study (grant number 13.106). We would like to thank all the participants for their time and efforts. We especially thank Anna Zentveld who participated in the focus group, pilot tested the card sorting task and who was indispensable in the interpretation of the clusters to guarantee the burn survivor’s perspective in all phases of the research. Thanks are also due to Jorinde Duits, Manon Schouten and Harry Hornman for performing interviews
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