Classification of quality of life subscales within the ICF framework in burn research: Identifying overlaps and gaps
Introduction
Two decades ago, the World Health Organization (WHO) defined quality of life (QOL) as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment” [1], [2]. Since then, QOL has received increasing attention, including in burn populations, and a burgeoning body of research documented burn survivors’ health-related quality of life (HRQOL) [3], [4], [5], [6], [7].
In burn research various generic HRQOL self-report measures have been used. The most common burn specific questionnaire available is the Burn Specific Health Scale (BSHS) that has a long history of several adaptations [4], [8], [9]. The most frequently used version in recent years is the Burn Specific Health Scale Brief (BSHS-B) that has been translated in several languages all over the world [4], [10]. The BSHS-B has been shown to be measurement invariant across two European countries, indicating its stability across cultures [11]. However, it is currently unclear to which extent the BSHS-B and generic HRQOL measures are complementary or overlapping in measuring different aspects of HRQOL following burns and whether the full spectrum of disability is captured by using (a combination of the) questionnaires.
To elucidate which HRQOL aspects are covered by the currently used self-report measures a broad bio-psycho-social framework is of interest. The International Classification of Functioning Disability and Health (ICF) is a worldwide used framework to describe the health condition of a patient in such a context. The ICF inventories all domains of disability from body, individual and societal perspectives [12]. As presented in Fig. 1, disability involves dysfunctioning at one or more of these levels: impairments in body function or structures, activity limitations and participation restrictions. The environmental factors (physical and social environment) and the personal factors, such as age, gender and marital status, may influence human functioning in a positive or negative manner. In sum, the ICF enables the understanding of phenomena related to function that may be particularly relevant when assessing quality of life following burns.
Despite the growing attention for functional outcome during the last fifteen years in burn research the limited application of HRQOL measures within the ICF framework is notable with very few burn articles on this subject [12], [13]. One review on functional outcome identified seven core domains that were considered essential to comprehensively assess outcome after burns [15]. The core domains proposed are skin, neuromuscular function, sensory and pain, psychological function, physical role function, community participation and perceived quality of life, but it is unclear to which extent the proposed domains are captured in the most commonly used self-report measures. In a systematic review concepts of common outcome measures in burn care were considered within the ICF framework using standardized linking rules. HRQOL questionnaires were included in this study and it was reported that 43 concepts (out of 50) of the BSHS-B could be linked to the ICF [14]. In clinical practice, however, the interpretation of the outcome is often based on the subscale scores of the questionnaires, rather than interpreting the distinct items. Currently, no reports are available linking the subscales of the HRQOL questionnaires to the ICF framework in an attempt to describe functioning following burns.
The aim of this study is to classify the subscales of frequently used HRQOL measures within the ICF and to answer the question if these instruments are able to describe the broad spectrum of patients’ functioning. Moreover this paper seeks to address the following questions: What aspects of HRQOL do the different questionnaires measure? What aspects of HRQOL are left uncovered? Which different domains of ICF are covered by each questionnaire?
Section snippets
Selection procedure
The electronic database PubMed was searched for English-language empirical studies, published between 1990 and 2013 using a combination of Medical Subject Headings (Mesh).The Mesh terms ‘Quality of life’ and ‘Burns’ were combined with the following three keywords: ‘Questionnaires’, ‘Outcome Assessment (Health Care)’ and ‘Survey’. Articles on children, burns other than skin burns (e.g., eye burns, inhalation injury) and other outcome measures were excluded. After screening the abstracts and the
Comparison of the ICF domains across the questionnaires (horizontal comparison in Table 1)
Table 1 represents the ICF framework subdomains covered by the respective subscales included into the three questionnaires. The generic scales covered the health condition domains, although the SF-36 provided more different information relative to the EQ-5D, in particular in the body function and the participation domain. Both generic questionnaires excluded contextual factors. The BSHS-B included all health condition domains and personal factors but excluded environmental factors. None of the
Discussion
A literature search revealed that the SF-36 and the EQ-5D were the most frequently used generic HRQOL questionnaires in burn-related studies over the last two decades. The BSHS-B version was the only disease specific HRQOL measure available. The subscales of the respective questionnaires were linked to the ICF domains. In general this classification revealed that the body function, activity and participation domains were covered by the three questionnaires. Contextual factors were poorly
Source of funding
There was no external funding source for this study.
Conflicts of interest
There are no conflicts of interest to declare.
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