The Institut Guttmann uses an objective and systematic process to assess the short-, medium- and long-term outcomes of the rehabilitation process to determine the benefits of our therapeutic process on the functionality, quality of life and participation in the community of the patients we see at our institute, and to evaluate the effectiveness of the working methodology used. This allows us to determine the evolution of our outcomes and compare them with those of other centres specialising in neurorehabilitation on an international level.
Different internationally approved scales are used on each patient, based on the type and severity of the injury: on admission, throughout the therapeutic process, on clinical discharge and in regular subsequent assessments (2 and 5 years). The outcomes of patients who completed their neurorehabilitation process at the Institut Guttmann in 2020 and who are over 16 years of age are presented below.
Results at Discharge Clinic. Spinal Cord Injury Patients
During 2020, 190 adult patients with spinal cord injury completed their neurorehabilitation process, 46.8% of whom had paraplegia, 25.8% tetraplegia and 27.4% other pathologies (Guillain-Barré, myopathies, post-polio syndrome, etc.).
| Type of injury | ||
| Complete paraplegia | 25 | 13,2% |
| Incomplete paraplegia | 64 | 33,6% |
| Complete tetraplegia | 9 | 4,7% |
| Incomplete tetraplegia | 40 | 21,1% |
| Others | 52 | 27,4% |
| Total | 190 |
The most frequent level of studies among the population attended this year is secondary (46%), followed by higher education (25%) and primary (23%) studies. Their mean age was 51 and the majority were men (68%).
In 51% of cases the origin of the injury is medical, compared to 49% of traumatic origin.
Among patients discharged in 2020, 7% were readmissions for complications (prior to 2 years after discharge). The main complications treated deriving from a disability were urological, traumatological, and due to spasticity and pain. Once the rehabilitation process was completed, 93% of patients returned to their home, while 7% required an institutional alternative on a temporary or permanent basis. Over the past 10 years, this percentage has remained steady with minimal variations (mean 90%).
Regarding the functionality achieved, this is measured with the international Functional Independence Measure (FIM) scale, which measures the patient’s capacity for independence in performing activities of daily living (ADLs). The FIM-Total is the sum of the two areas (cognitive and motor) and the score ranges from 18 to 126 points – the higher the score, the better the patient’s level of functionality.
We also use the Spinal Cord Injury Measure (SCIM III), the functional assessment scale used by the EMSC Group (European Multicenter Study about Spinal Cord Injury), an association featuring the best European rehabilitation hospitals, including ours. As shown in the following figures, Institut Guttmann patients improve in functionality on both the FIM scale and the SCIM III scales.
The SCIM III scale specifically measures functional independence in spinal cord injuries. It has a range of values from 0 to 100 points – the higher the score, the more independent the person (where 0 is complete dependence and 100 is complete independence).
As has already been shown, the Institut Guttmann’s patients obtain significant improvements in terms of functional rehabilitation, but also at the psychosocial level. After neurorehabilitation treatment, self-perception of quality of life (QoL) improves in 62% of cases.
Based on a predictive analysis of the factors that determine a person’s self-perception of quality of life on discharge, it can be concluded that the presence of symptoms of depression on admission statistically determines self-perception of quality of life on discharge.
The Institut Guttmann provides psychological support from admission to all patients with spinal cord injury through the use of personalised treatment. The results of the psychological intervention are positive, as they improve the symptoms of depression (in over half of cases) and consequently the overall positive self-perception of our patients’ quality of life increases.
The state of depression is measured using the Hospital Anxiety and Depression Scale (HADS). The questionnaire consists of 14 items divided into two subscales of Anxiety (HAD-A) and Depression (HAD-D), each consisting of 7 items that are rated on a Likert-type scale with scores from 0 to 3, with a score of 0 corresponding to the most favourable response and 3 to the least favourable. The scores in each subscale range from 7 to 21. The higher the score, the greater the risk of symptoms and emotional distress.
Relationship between functionality, community integration and quality of life
A quality-of-life study was carried out in which the relationship between social variables (CIQ scale) and functionality variables (FIM scale) for people with a traumatic spinal cord injury was analysed (975 patients assessed between 2007 and 2020). As a relevant conclusion of this analysis, it is confirmed that there is a statistically significant relationship between the total score of the CIQ and the total score of the FIM, both for people with paraplegia and tetraplegia. If a detailed analysis of all the variables is made, it is observed that the correlation is especially strong between the CIQ dimension on home integration with the FIM (as in both cases the ADLs are assessed). On the other hand, in the other dimensions of the CIQ, such as social integration and productive activities, the correlation with the FIM is weaker.
With regard to the analysis of community integration (CIQ scale), it can be stated that community integration decreases as the age of the patients increases and is lower for people with tetraplegia. A significant decrease in the level of community integration is observed after 59 years of age. On the other hand, it has been found that CIQ results are higher (greater integration) the more time has passed since the date of injury, especially for people with tetraplegia.
Next, the variables of the WHOQOL-BREF, a scale that measures the self-perception of Quality of Life (QOL), have been added to the analysis. With the incorporation of these data, it is observed that Quality of Life is strongly associated with community integration (Total CIQ) and is weakly correlated with the level of functionality (Total FIM). Therefore, as integration in the community increases, the perception of a better quality of life among the people participating in the study also increases. In contrast, the correlation between a better perception of QoL and better functionality is weak. Therefore, the importance of community intervention with people with SCI is evident. This means that beyond functional rehabilitation, it is essential to intervene to promote improvements in participation and social inclusion from disciplines such as social work or occupational therapy.
Results at Discharge Clinic. Acquired Brain Damage Patients
In 2020, 385 adult patients completed their intensive and specialised neurorehabilitation process, 21% of whom were of traumatic origin (TBI, traumatic brain injury), 47% of vascular origin (CVD, cerebrovascular disease) and 31% owing to other pathologies.
| Type of injury | ||
| Traumatic brain injury (TBI) | 83 | 21,4% |
| Stroke (CVD) | 184 | 47,4% |
| Other non-traumatic brain injury | 121 | 31,2% |
| Total | 388 |
The most frequent level of studies among the population attended was secondary (46%), followed by higher education (28%) and primary (23%) studies. Their mean age was 48 and the majority were men (62%).
Among patients discharged in 2020, 2% were readmissions for complications (prior to 2 years after discharge). The main complications treated deriving from a disability were traumatological.
Once the rehabilitation process had been completed, 91% of patients returned to their residence or a new residence, and only 9% required an institutional alternative on a temporary or permanent basis. This percentage is similar to what has been seen over recent years (average 88%).
Regarding functionality, we differentiate between:
- Outcomes on Clinical Discharge. Patients with Traumatic Brain Injury
Of the 83 patients having sustained a TBI who received treatment and rehabilitation, 76.2% were seriously impaired on admission according to the Glasgow Coma Scale.
Another assessment scale is the Disability Rating Scale (DRS) for patients with TBI. Our patients went from severe disability on admission to moderately severe disability on discharge, with a mean improvement of 4.34 points.
The DRS is a scale designed to assess patients who have sustained a moderate to severe TBI. The total DRS score ranges from 0 (no disability) to 29 (extreme vegetative state), therefore the lower the score, the better the patient’s functional status. The following classification in groups is considered: 2-3 partial disability, 4-6 moderate disability, 7-11 moderately severe disability, 12-16 severe disability, 17-21 extremely severe disability, 22-24 vegetative state, 25-29 extreme vegetative state.
- Outcomes on Clinical Discharge. Patients with Cerebrovascular Disease
The mean age of the 184 patients who received clinical discharge for this diagnosis was 52. The Barthel scale was administered to assess their functionality, showing a mean improvement of 28.33 points on discharge compared to admission. As the distribution of means in the figure below shows, our patients went from severe dependence on admission to moderate dependence on discharge.
* The FIM scale measures the patient’s independence ability to carry out activities of daily living (ADLs). The FIM-Cognitive has a range of values from 5 to 35 points and the FIM-Motor from 13 to 91 pThe Barthel scale, widely validated for these patients, measures the patient’s capacity for independence in going about activities of daily living (ADLs). The scale varies from 0 to 100, where 0 is complete dependence and 100 is full functional autonomy in performing ADLs. A classification by Shah et al, Improving Index for Stroke Rehabilitation (J Clin Epidemiol. 1989), was considered as a reference. It considers the following groups: 0-20 total dependence, 21-60 severe dependence, 61-90 moderate dependence, 91-99 limited dependence, 100 independence.oints. The FIM-Total results from the sum of the two areas (cognitive and motor) and the score ranges from 18 to 126 points, so the higher the score, the better the patient’s level of functionality.
- Outcomes on Clinical Discharge. Patients with Other Causes of Brain Damage
121 patients with other non-traumatic brain damage, resulting from tumours, anoxia, infections, etc., completed the rehabilitation process. Their mean age was 47.
Regarding the functionality achieved, the figure below shows how our patients achieved an improvement in functional level in both the cognitive and motor areas (assessed using the FIM scale). In the total score, an improvement of 20 points was achieved on discharge compared to admission.
Assessment of the social situation on discharge compared to the start of the rehabilitation process
The Social and Domestic Assessment Scale of the Institut Guttmann (EVSF-IG) aims to contribute to recognising and assessing the personal, domestic and social situation of the patient seen and helps detect situations of risk or social problems in order to make an appropriate intervention based on the needs of each patient.
To analyse the data, we compared the total score of patients on admission with the total score on discharge (difference between the two values).
According to data from 2020, the social and domestic situation improved in 47% of cases, was maintained in 41% and was worse in 12%.
Regarding the type of injury, stroke and head trauma patients are those that improve their social and domestic situation most frequently.
Outcomes two (2) years and five (5) years after clinical discharge
Rehabilitation takes on its true meaning and usefulness in health care when it allows people to maximise their functional autonomy and go about their lives with dignity, independence, quality of life and active social participation, despite their functional limitations.
For this to be possible, it must be possible to guarantee that everyone receives quality rehabilitation, but it is essential to have an inclusive society and laws that respect functional diversity and that promote effective equalisation of opportunities.
This is what we strive to measure through the regular assessments that we perform on all our ex-patients (SCI and ABI) two and five years after they complete their rehabilitation process at our hospital. These regular assessments not only rule out any disease resulting from their injury that might go undetected, they also assess the patient’s autonomy, quality of life and degree of social participation, among other aspects.
The Community Integration Questionnaire (CIQ), which helps measure the level of community integration after an injury, was administered in this context. It consists of 25 points related to home integration, social integration and productive activities. A compilation of our patients’ outcomes on some of its items appears below:
Impact of the Covid-19 pandemic
We wanted to analyse the impact of the pandemic on the SCI population (former patients) and ABI (caregivers):
- Population with SCI
We have carried out a prospective observational cohort study in which people with long-standing spinal cord injury living in the community have participated. The objective is to compare the assessments obtained in psychological aspects, community integration and quality of life during the pandemic (from June to November 2020) with the same assessments obtained before the pandemic to assess its impact.
The GutForms online tracking tool has allowed us to continue to remotely conduct regular comprehensive assessments of former patients living in the community. These virtual appointments include the same assessments that were performed in person during the pre-pandemic era.
Previous studies show that Covid-19 does not affect everybody equally, but that the most vulnerable people can be especially affected. It is therefore of special interest to analyse the impact of Covid-19 in relation to psychosocial aspects in people with disabilities of neurological origin in the chronic phase.
The following instruments have been used for comparative analysis: HADS (Hospital Anxiety and Depression Scale) to assess anxiety and depression, the CIQ (Community Integration Questionnaire) to assess community integration, and the WHOQOL-BREF (World Health Organization Quality of Life) to assess quality of life.
This study has allowed us to observe that there is a negative impact of the pandemic on the state of depression and social integration (the main idea of the community integration scale). The data analysed show that depression symptoms increased during the pandemic and the level of social integration decreased.
| Social Dimension (CIQ) | Level of social integration |
| Before the pandemic | 7.54 |
| During the pandemic | 7.20 |
| Symptoms of depression (HADS) | Depressed state |
| Before the pandemic | 4.63 |
| During the pandemic | 5.73 |
When we separated the population studied into two groups according to their age (under and over 55), we detected that the pandemic significantly affected the group of under-55s in two dimensions of quality of life (physical and psychological), while in the group of older participants we did not detect differences in any of the four dimensions of quality of life (physical, psychological, social and environmental). If we analyse the data by gender (separating men and women), we have found that the level of depression significantly increased during the pandemic in both groups. However only men worsened in the physical dimension of quality of life (while in women none of the four dimensions were affected) and that only women worsened in the social component of the CIQ.
- Population with ABI
Using the same GutForms online assessment system, we were able to compare the assessments obtained in emotional aspects (ten items) and behaviour (ten items), reported by 122 informal caregivers of people with stroke or TBI in the chronic phase during the pandemic (June 2020 to December 2020) with the same assessments obtained before the pandemic, in order to assess the impact of the pandemic on informal caregivers.
We found a significant increase in the level of stress in informal caregivers in six items related to emotional aspects: impatience, irritability, frequent complaints, rapid mood swings, stubbornness and hypersensitivity.
And in three items related to behavioural aspects: impulsivity, dependence on others and lack of control.
When we stratified the participants according to the type of injury of the people they care for (TBI and stroke), we found an increase in stress in six items in caregivers of people with stroke: impatience, rapid mood swings, frequent complaints, dependence on others, stubbornness and hypersensitivity, and a single item in caregivers of people with TBI which was impulsivity. Therefore, the emotional impact on caregivers of people with stroke was clear, while the impact on caregivers of people with TBI seems to be masked by higher stress levels prior to the pandemic.
