Cognitive Sequelae, Autonomy, Social Participation and Quality of Life Over 10 Years after Traumatic Brain Injury

  


    
Group

    
Social    participation (PART-O)

  

  


    
Productivity

    
Social relations

    
Out and about

    
Total

  

  


    
 

    
5 

    
5-10 

    
25-50

    
<5

  

  


    
 

    
50 

    
10-25 

    
50-75

    
5-10

  

  


    
 

    
<5 

    
10-25 

    
<5

    
<5

  

  


    
1

    
<5

    
<5

    
<5 

    
<5 

  

  


    
1

    
<5

    
>75

    
>75 

    
50-75 

  

  


    
1

    
10

    
50-75

    
<5 

    
50-75 

  

  


    
1

    
50 

    
10

    
50-75

    
10-20

  

  


    
1

    
<5

    
10-25

    
50-75 

    
<5 

  

  


    
1

    
<5

    
10-25

    
25-50 

    
<5 

  

  


    
1

    
10-25 

    
<5 

    
15-25

    
<5

  

  


    
1

    
10-25

    
25-50

    
<5 

    
<5 

  

  


    
1

    
5

    
<5

    
>75

    
25-50

  

  


    
1

    
5 

    
>75 

    
50-75

    
20-25

  

  


    
1

    
75 

    
= 75 

    
>75 

    
>75

  

  


    
1

    
5 

    
50-75 

    
50-75

    
5-10

  

  


    
2

    
<5

    
5-10

    
25-50 

    
<5 

  

  


    
2

    
<5

    
<5

    
<5 

    
<5 

  

  


    
2

    
50

    
25-50

    
50-75 

    
25-50 

  

  


    
2

    
<5

    
<5

    
10-15 

    
<5 

  

  


    
2

    
<5

    
50 

    
50-75 

    
5-10 

  

  


    
2

    
<5

    
10-25

    
25-50 

    
<5 

  

  


    
2

    
<5

    
50-75

    
<5 

    
<5 

  

  


    
2

    
10

    
50 

    
>100 

    
50-75 

  

  


    
2

    
10-25

    
<5

    
10-25

    
<5 

  

  


    
2

    
5 

    
10-25 

    
5-10

    
<5

  

  


    
2

    
= 75 

    
= 75 

    
25-50

    
>75

  

  


    
2

    
5 

    
10-25 

    
>100

    
25-50

  

  


    
2

    
5 

    
5-10 

    
25-50

    
<5

  

  


    
2

    
75

    
25-50

    
50-75

    
50-75

  

  


    
Note:The social participation    scores correspond to percentiles based on the norms from Holin et al. (in    preparation). Bold values represent pathological scores. 1 = Time elapsed    since TBI between 10 and 18 years. 2 = Time elapsed since TBI more than 19    years. 

  

Table 2: Distribution of standardized social participation scores assessed with the PART-O scale.

The score for social relations was higher (M=2.4; SD=1.02). Indeed, 79% of the sample fell within the norm, while six participants had deficient scores. For the score of out and about (M=1.11; SD=0.52), 79% were within the norm, and six participants had a deficient score. Lastly, total participation was low for almost half of the participants, with 48% having a social participation score below the norm (Table 2). The non-parametric Mann-Whitney test did not show significant differences between the two groups of participants for any social participation index (productivity U=72.5; p=0.550; social relations U=77.5; p=0.757; out and about U=60.5; p=0.235; total U=71.0; p=0.527), divided based on the time elapsed since the TBI. Finally, regarding protective measures, 45% of our sample were under guardianship, 7% under trusteeship, and 52% had no legal measures in place.

Living space: We could observe a change in living situations between T1 and T2. Before the TBI, all the participants lived with family (55%) or as a couple (55%). Two years after the TBI, 59% of our participants were living with their parents, 24% were in a relationship, 7% were living alone, and 10% were in institutions (MAS or rehabilitation centers). At T2, 28% were living alone, 31% were living with their parents, 24% were in a relationship, and 17% were in institutions (MAS, FAM, shared housing, and therapeutic apartment). The age at which the TBI occurred could explain the living situation before the TBI (Figure 2). Indeed, when the TBI occurred after the age of 40, the majority of participants continued to live in a relationship. For individuals who had a TBI between the ages of 18 and 25, most never left their parents' home. On the other hand, when the TBI occurred between the ages of 26 and 40, it was common for individuals to live with their parents or be in a relationship before the TBI, and then to become independent or separate after the TBI. That's why more of them were living alone at T2 (Graph 2).

Relationship between Social Participation and Other Study Parameters

Spearman's rank correlation coefficients were calculated between the four subscores of social participation (productivity, social relations, out and about, and total score), the three subscores of autonomy (total autonomy, autonomy for basic daily activities, and autonomy for elaborate activities), and quality of life for both groups of participants.

No significant correlations were found for the group of participants who were more than 19 years post-TBI at the time of data collection. However, for the group with a shorter time since TBI (between 10 and 18 years), a significant correlation was observed between total participation and basic autonomy (p=-0.58; p=0.030). Additionally, the scores obtained from the MoCA test were correlated with the "total participation" subscore (p=0.55; p=0.040), total autonomy (p=0.64; p=0.014), elaborate autonomy (p=0.55; p=0.040), and basic autonomy (p=0.58; p=0.030) Participants with higher MoCA scores tended to have better scores in social participation and autonomy.

However, no significant correlation was found between social participation and quality of life at T2.

Discussion

The objectives of this study were to describe the population in the long-term aftermath of TBI to gather information about the aging process of these individuals in terms of the evolution of cognitive abilities, autonomy, quality of life, and social participation at least 10 years after the TBI. The study aimed to investigate whether the time elapsed since the TBI influenced cognitive abilities, autonomy, social participation, and quality of life. The hypothesis was formulated that social participation could serve as a marker for the quality of aging after a TBI. Therefore, the study examined the influence of long-term cognitive deficits, autonomy, and quality of life on social participation based on the time elapsed since the TBI. A comparison was made between cognitive abilities, social participation, autonomy, and quality of individuals who were 10 to 18 years post-TBI at the time of data collection and those who were 19 years or more post-TBI.

No significant differences were found, indicating that the time elapsed since the TBI is not a factor that influences the aging process. This outcome was supported by the similarity between the two participant groups in terms of age, gender, TBI severity, age of TBI onset, and socio-cultural level. Consequently, the lack of significance suggests that the time elapsed does not impact the long-term evolution, indicating that aging in individuals with TBI who are not affected by neurodegenerative conditions is determined by multiple factors.

Evolution of Cognitive Deficits

On the cognitive aspect, the MoCA rapid screening test showed an overall cognitive efficiency that mostly fell below the norms. Furthermore, participants tended to report an increase in cognitive difficulties as they aged. However, it's challenging for individuals to accurately assess their cognitive complaints and their evolution [32]. Since cognitive impairments are at the core of issues faced by individuals with TBI [2,3], they may have focused on their cognitive deficits and tend to magnify them. Additionally, Vallat-Azouvi et al. (2021) [33] found that episodic memory deteriorated eight years after TBI. Given that memory complaints are the most common after TBI [2], individuals who experience these may solely rely on their memory abilities to judge their overall cognitive capabilities, which could also explain the perceived experiences of individuals with TBI.

Evolution of Autonomy

This study also highlights a decline in autonomy among individuals with TBI, particularly noticeable for more complex daily activities compared to basic activities. These findings have been consistent in the literature for some time. For instance, Mazaux et al. [34] previously demonstrated that five years after the trauma, complex daily activities such as handling administrative tasks, financial management, letter writing, calculations, driving, weekly planning, and using public transportation were the most impaired. Our study has revealed similar results at least ten years after the TBI.

Evolution of Quality of Life

Regarding quality of life, it appeared to improve several years after the TBI in our sample. Quality of life is a broad concept that can be influenced by multiple factors such as physical health, psychological state, level of independence, social relationships, and one's relationship with essential elements of their environment [35]. As a result, these results can be explained in various ways. For instance, some of our participants who were students at the time of the TBI were living with their parents and are now independent. Other individuals who experienced the TBI at a later age had older children who could have changed the family dynamic, thus contributing to the decrease in quality of life. Indeed, we observed an evolution in living arrangements that differed based on the age of TBI onset. Those who sustained a TBI at a young age generally lived with their families at the time of the TBI. Later on, they might regain their independence and live alone or continue living with family members, often with a parent serving as a primary caregiver. Similarly, individuals who experienced a TBI at a more advanced age were often living with their families at the time of the TBI and continued to live with their spouse as a primary caregiver. Those who were in a relationship at the time of the TBI were also often found to be living alone several years after the TBI due to the departure of their partner. These findings were consistent with previous studies [36] and are explained by the challenges posed by the TBI, without necessarily establishing a direct link with aging. In other words, beyond the TBI and its functional consequences, the life context can influence the quality of life independently of the TBI. Additionally, a patient's acceptance of their new state can impact their level of quality of life. The TBI, with its resulting sequelae, requires adaptation and the establishment of new plans in social, marital, parental, professional, and recreational aspects. Thus, an individual who persistently aims to return to their professional activity even if they will never be capable of doing so, for instance, may experience distress that could even lead to depression [37]. Unfortunately, depression was not measured in our study due to time constraints.

Evolution of Social Participation

The PART-O questionnaire, which measures social participation, highlighted that over half of the participants had an average total social participation score lower than what is typically observed in the general population, mainly due to the productivity subscore. These findings are not surprising given that a significant number of participants in our sample had not returned to work or education. However, we did observe good scores in social relations and outdoor activities. TBI often impacts social relationships [36], yet it is frequently noted that family bonds are strengthened [38]. Consequently, individuals with TBI can remain well-integrated socially. Moreover, individuals might be part of associations or engaged in specialized medical-social structures for brain-injured individuals, as was the case for 30% of our sample (15% with residential care and 15% in day programs). As a result, they are offered a variety of activities, enabling them to engage out and about and maintain numerous social connections.

Factors that can Influence Social Participation

Social participation, considered a factor of aging well [25] is associated with a reduced risk of disability [39], and is a key element in the study of aging. Furthermore, social participation can influence cognitive abilities and is linked to a lower risk of age-related cognitive decline in healthy individuals [40]. Our study highlights a significant correlation between cognitive abilities and the social participation score. As previously shown in scientific literature, particularly in the context of neurodegenerative diseases, social participation contributes to cognitive reserve, which in our context would help cope with the brain injuries caused by TBI and their long-term consequences [41].

We sought to identify other factors that could be related to social participation. Correlational statistics revealed a link between social participation and cognitive abilities for the group of participants who were 10 to 18 years post-TBI at the time of data collection. However, we cannot conclude that social participation limits cognitive decline, as it could be the case that individuals with better cognitive abilities have greater social participation. Additionally, we did not find these results for the second group of participants. Given our limited sample size, further studies with larger samples are needed to determine whether social participation can indeed mitigate cognitive decline and consequently reduce the loss of autonomy associated with aging.

Limits

This study has several limitations. The number of participants is relatively small considering the inclusion criteria and the challenges of recontacting individuals who are no longer in a medical pathway. The small sample size restricted the number of factors that could be included to explain the aging of individuals with TBI. Furthermore, the size and heterogeneity of the sample limited the statistical power of the study. On the cognitive aspect, we interviewed patients about their evolution between two years post-TBI and at least ten years after TBI; there might be a memory bias that could distort some of the results. Individuals with TBI often have anosognosia [2]. However, to mitigate this bias, we also interviewed caregivers who are with the TBI individuals on a daily basis, especially to assess their autonomy.

Despite these limitations, this study, which includes individuals who suffered from medically confirmed moderate to severe TBI, adds to the limited research focused on the aging of individuals with TBI. It describes the TBI population at least ten years after their injury in terms of cognition, autonomy, social participation, and quality of life.

Conclusion

This study highlights that being a victim of moderate to severe TBI does not systematically lead to long-term cognitive decline. The evolution of cognitive abilities appears to be highly heterogeneous. The time elapsed since the TBI does not seem to influence the aging process in TBI individuals. Thus, this study’s results suggest that TBI individuals’ aging might be characterized by a premature decline in cognitive capacities due to the TBI, but not necessarily an accelerated aging process [5]. Our findings align with those of Hicks et al. (2021) [24].

Furthermore, following this study, we observed that reaching out to TBI individuals several years after their injury has been beneficial for some who were no longer receiving care and were facing aging-related challenges. Many patients complained about the lack of long-term follow-up after a TBI. Therefore, this study has helped identify the needs of patients and their families, aiming to improve their care. Additionally, this study suggests that social participation could be associated with better aging outcomes after a TBI, as is the case in the general population. As a result, promoting social participation is essential to increase the likelihood of healthy aging.

In conclusion, this study provides valuable insights into the long-term consequences of TBI and challenges the assumption of uniform cognitive decline among TBI individuals. It highlights the importance of continued care and support for TBI survivors as they age and underscores the potential benefits of social engagement in promoting healthy aging outcomes.

Author Statements

Acknowledgments

We thank the International Foundation for Applied Research on Disability (FIRAH) and the Haut-de-France Regional Council for funding Samantha Holin's PhD fellowship as part of the present study. We also thank all the participants who participated in the study.

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