Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation

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Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation

Acquired brain injury (ABI) isui a leading cause of death and disability in the world (Nichol et al., 2011). In Spain, there is a prevalence of 420,064 people with ABI and approximately 104,701 new cases per year (Quezada et al., 2015). Although it is increasingly possible to save more lives because of advances in medicine, the percentage of people left with impairments after the ABI is very high, even with mild injuries (Chiang et al., 2015, Haagsma et al., 2015). Individuals who have sustained an ABI often experience physical and emotional problems (Haagsma et al., 2015, Lin et al., 2010, Yeoh et al., 2019), cognitive deficits (Grauwmeijer et al., 2018, Yeoh et al., 2019) and behavioural and social alterations (Azouvi et al., 2016, Lin et al., 2010). Some of these impairments may have a prolonged progression time that lead to chronic health problems (Azouvi et al., 2016, Grauwmeijer et al., 2018), which negatively impact the quality of life (QoL) (Andelic et al., 2009, Forslund et al., 2013, Pagnini et al., 2019, Yeoh et al., 2019).

Traditionally, QoL has been studied through generic instruments conceptualized from a health-related QoL approach (HRQoL), such as the SF-36 (Ware & Sherbourne, 1992). HRQoL focused on very specific domains of the person’s QoL, mainly related to health and physical well-being. In recent years, a specific instrument for ABI has been developed: the QOLIBRI scale (von Steinbüchel et al., 2010), which allows a more specific and comprehensive QoL evaluation. However, it continued to be sheltered by the HRQoL model, excluding important QoL areas such as self-determination, material well-being or personal development. In addition, this instrument has been used only in populations with traumatic brain injury (TBI), while its use in other ABI aetiologies (stroke, brain anoxia, brain tumour or cerebral infection) has been ignored.

In 2018, a specific-ABI QoL instrument was developed and validated, based on a comprehensive model that considers a psychosocial approach that goes beyond aspects merely related to health, and that can be used in the entire ABI population: the CAVIDACE scale (Fernández et al., 2019). This instrument is based on Schalock and Verdugo’s QoL model, which has been widely used in other populations, such as intellectual and developmental disabilities (Schalock & Verdugo, 2002) and the elderly (Vanleerberghe et al., 2017). According to the model (Schalock et al., 2018), QoL is a multidimensional phenomenon that reflects the well-being desired by the person in relation to eight basic needs: emotional well-being (EW), interpersonal relations (IR), material well-being (MW), personal development (PD), physical well-being (PW), self-determination (SD), social inclusion (SI) and rights (RI). Moreover, this core domain shows intergroup stability and sensitivity to personal perceptions, including subjective and objective aspects, and are influenced by environmental and personal factors and their interaction (Schalock et al., 2016, Schalock et al., 2018).

QoL has been considered a subjective construct that should be evaluated through self-report. However, in many cases of people with ABI, this is not possible due to the severity of the impairments (e.g., consciousness alterations) or the inability to communicate (e.g., global aphasia). Furthermore, the validity of the self-reports has been questioned because of the frequent presence of memory alterations and anosognosia in this population (Formisano et al., 2017, Grauwmeijer et al., 2018). Therefore, in some cases, it is necessary to use QoL instruments that can be answered by a relative or professional who knows the person (Kozlowski et al., 2015). However, there are very few studies that have analysed the discrepancies depending on the assessment approach (Verdugo et al., 2005) and how they have evolved over time. The existing studies show discordant results, with some showing an overestimation of the QoL by the ABI person when compared to their relatives’ evaluation (Formisano et al., 2017, Hwang et al., 2017, Kozlowski et al., 2015) and others showing high correlations between the results found (Câmara-Costa et al., 2020).

QoL after ABI is not stable over time. Most of the studies refer to a period of time around one (Chiang et al., 2015, Haller et al., 2017, Pucciarelli et al., 2019, Yeoh et al., 2019) or two years after ABI (Hu et al., 2012, Zhang et al., 2013), in which the QoL can improve and then achieve stability (Andelic et al., 2018, Forslund et al., 2013, Grauwmeijer et al., 2018), but generally staying lower than in the normative population (Forslund et al., 2013, Hu et al., 2012, Yeoh et al., 2019, Zhang et al., 2013). On the other hand, there are studies which show late recovery patterns three and four years after ABI (Gould & Ponsford, 2015), while others have shown evidence that the QoL worsens from the beginning (Schindel et al., 2019). The use of different instruments, aetiologies and research designs could explain this lack of agreement. However, they distinguish different evaluation patterns in QoL levels, and these patterns depend on multiple factors such as age, gender or severity of the injury (Scholten et al., 2015). Furthermore, the QoL evolution is not uniform between the different domains, with higher rates of improvement in the physical aspects than in the emotional (Haller et al., 2017, Scholten et al., 2015) and social areas (Chuluunbaatar et al., 2016, Lin et al., 2010, Pucciarelli et al., 2019).

In summary, longitudinal QoL studies in ABI have typically reported an initial period of improvement followed by later stabilization. However, we do not have comparative data on this evolution depending on whether self- or proxy-report instrument are used, or taking into account QoL’s domains that go beyond a HRQoL model. This manuscript aimed to contribute to the current literature by: (1) describing the patterns of evolution of the eight-QoL domains over a one-year follow-up in a sample of Spanish adults with ABI; (2) determining whether there are differences when the QoL assessment is carried out by a relative, professional or by the person with ABI; and (3) examining whether these evolution patterns depend on the time elapsed since the injury, considering recent (i.e., three years or less) or chronic ABI.