The quality of life of persons with TBI in the process of a Comprehensive Rehabilitation Program1

Background

THE ESSENCE OF QUALITY OF LIFE:

In medical studies of patients with a variety of brain damage types, the definition of Health-Related Quality of Life – HR-QOL is most commonly used [13–16]. The essence of Health-Related Quality of Life is often identified with the degree of perceived well-being, lack of symptoms and psychological condition and the ability to undertake various activities [16].

A review of the literature allows one to observe that this term is used in at least three different meanings. And so the quality of life is understood as:

In this paper we have adopted the definition which the authors from the Cracow Rehabilitation Centre have developed [31–33]). The basis of the definition is that a feeling of contentment and happiness regarded as essential to quality of life depends largely on the difference felt by the patient between:

and their current implementation and the real (or perceived) opportunities for their implementation in the future. Thus understood, the essence of quality of life turns out to be more useful in the clinical approach to nervous system damage [31], particularly in those patients who have suffered brain and brain stem injury [3], as it is determined by the difference between the present state and the target state of the patient in light of the possibilities of reducing this gap to an acceptable level limited by the disease [7].

Through a comprehensive approach to human functioning in all its dimensions (physiological, emotional, mental and spiritual), which in fact, as noted by Grochmal-Bach [34], are hardly separable – the possibilities are also created by evaluating the effects of rehabilitation.

It is common knowledge that the effects of serious emotional problems can be felt in human physiology. The spiritual crisis often leads to unfavourable changes in many systems, and only an exceptional man in the face of serious, long-term illness or disability feels inner peace and the closeness of God. This does not mean that the physiotherapist has to be simultaneously a doctor, psychotherapist and priest for their patients. However, without attention to the overall situation of the patient’s life it may be doubted whether our influence will have satisfactory results. Thus, examination of the effectiveness of rehabilitation in relation to the quality of life seems to be even more purposeful, with particular emphasis on the relation of the efficacy of a comprehensive, strategic approach to the issues of the quality of life discussed here. Escape from these issues can only be bought at the expense of the resignation from assessing the quality of life for our patients, which deprives all kinds of rehabilitation effects of the raison d’être.

Material and Methods

Research issues

ASSUMPTIONS AND OBJECTIVE OF THE STUDY: The aim of this study was to evaluate the effectiveness of the phased rehabilitation program in patients with cranio-cerebral trauma, controlled by the strategic plan [35–37], pertaining to their quality of life compared to patients treated according to a standard, phased rehabilitation program2.

Taking the assumption that conduct in the standard rehabilitation programs of the various treatments and therapy techniques being only in response to current problems does not lead to the overarching goal of rehabilitation, which is activating the mechanisms of adaptation and compensation, enabling the patient to obtain the best possible quality of life [16,23,38], a rehabilitation program controlled by a strategic plan was introduced, developed by Pąchalska et al. [36]. According to the authors, this program is geared towards the target, implemented with the cooperation of a patient after cranio-cerebral trauma, and adapted to the individual needs of a patient, treated subjectively. This approach assumes a significant contribution of the patient in the process of developing and implementing this plan.

Particular attention was paid to such factors as:

MATERIAL: The study included 40 patients with post traumatic brain injury treated at the Rehabilitation Clinic of the L. Rydygier Academy of Medical Sciences in Bydgoszcz (with the consent of the head of the Department) and the Department of Medical Rehabilitation in the Cracow Rehabilitation Centre (with the consent of the Head). The control group (n=20, including 11 men and 9 women) are patients rehabilitated according to a staged rehabilitation program [37] applied before the introduction of the strategic plan developed within the framework of the experiment, and focused on the goal. The experimental group (n=20, including 13 men and 7 women) are patients also rehabilitated according to a staged rehabilitation program, with additional application of the goal-oriented strategic program [36].

Such a selection of groups was due to:

RESEARCH METHODS:

In the studies, the following methods and tools were used:

In each category five activities were evaluated in terms of the estimated percentage participation of the patient in its performance. The level of assistance required by the patient is determined pointwise by the following scale, adapted from the widely used International Standards of Neurological and Functional Classification of Spinal Cord Injuries – ASIA Scale [39]:

Points were awarded on the basis of own examination and clinical history.

THE ORGANIZATION AND CONDUCT OF THE TESTS:

All tests were performed by the same person under similar location conditions and test circumstances, which gives a more reliable assessment of treatment outcome. The selection for groups was targeted, all individuals from both group K and group B, were awaken from the long-term post-traumatic (not pharmacological) coma. Persons available and suitable for research in terms of intellectual ability were selected.

Patients were tested twice, the first test was carried out before the start of rehabilitation, and the second after eight weeks of its duration.

The experiment excluded patients with very profound aphasia and patients with dementia. This fact was associated with the need for patient’s participation in some stages of the strategic planning process.

All subjects gave written informed consent to participate in the experiment, according to the protocol by the Bioethics Committee of the L. Rydygier Academy of Medical Sciences in Bydgoszcz.

The test methods were fully accepted by the subjects. Each of the subjects signed a written consent to being tested. The research project has the approval of the Bioethics Committee of the university.

Results

Changes in quality of life of the patients studied after cranio-cerebral trauma, including the results of research into the comparison of average results achieved by patients in both treatment groups in each category of Quality of Life Rating Scale [33] are shown in Table 3.

The quality of life of people after brain injury is affected by self-service difficulties, difficulties in meeting the physiological needs and loss of psychophysical comfort, decreased mobility, impaired cognitive functions (including communication difficulties) and executive and social functions disorders.

Statistical analysis performed using Student’s t-test for associated pairs shows that, upon comparing the average scores obtained by patients from both groups in each of the eight categories included in the applicable scale of quality of life assessment, the differences between the results from the first and second tests are highly statistically significant, at p=0.000035 for patients in group E, and in group K (p=0.0069). However, it is worth noting that the results of group K are significantly higher in the first study (p=0.00016), while in the second study, patients from group E, received significantly higher scores (p=0.016). This means a larger, statistically significant improvement, which occurred in group E, as a result of conducted rehabilitation, despite the slightly older age, and significantly worse outcomes in the Glasgow scale.

The results obtained by patients from both groups in the various categories of quality of life assessment are also shown graphically in Figures 1 and 2.

It was found that the differences between the results from the first and second test in group E are much larger than in group K. The group K profile shape has not changed much during the period from the first to the second test, while in group E, the shape is different significantly. In group K only the changes in category D are indicated, i.e. mobility and category E, i.e. the ability to communicate, while in group E, changes also occur in category C, i.e. in terms of physical and psychological comfort resulting from improvement in adaptability.

Motor functions, in both studied groups, are most susceptible to change associated with the rehabilitation process, while the least vulnerable are functions related to the use of different modes of transport. This change is much greater in subjects from group E than in those from group K.

There is no consistency between the stated (subjective) level of quality of life of the patient and the depth of objectively measured disability resulting from then injury sustained.

Discussion

In the summary and discussion it should be emphasized that the results obtained in this study may be affected by the depth of brain damage associated with the results obtained by the studied patients on the Glasgow scale. These results, as shown in the biographical characteristics of patients, were significantly worse in group E than in group K. Better final results obtained by patients from group E are all the more surprising, since at baseline, patients in this group obtained significantly lower scores than patients in group K. The fact that the studied groups were not at the same level of efficiency in the early studies did not result from a methodological error, but the neurological condition. Patients from group E had significantly lower values in the Glasgow scale than patients from group K.

Statistically significant differences between the two groups support the thesis, presented at the beginning of the article, that the quality of life of patients after cranio-cerebral injuries is ultimately determined not solely by the parameters for assessing the quality of life (because in this respect, patients in both treatment groups were well-paired), but the subjective reception of the course of their lives.

According to reports in the literature, also in this study a lack of consistency was found between the stated (or subjective) level of patient quality of life, and the objectively measured depth of his disability.

No one, admittedly, expresses satisfaction, e.g., with total paralysis of four extremities (this would raise reasonable doubts as to the sanity of the subject), however, cases were encountered in the material presented here where a person with lighter injuries mentioned a greater degree of discontent in a given range of functioning than a person who has suffered an irreversible loss of this function [21].

The specificity and complexity of the clinical picture of patients after cranio-cerebral injuries reduces the effectiveness of individual rehabilitation procedures, if the patient is unable to make an informed decision, or does not want to recognize own problems. With the passive attitude, resistance of the patient makes his general life situation after the rehabilitation unchanged, which deepens the dependence and/or social isolation [3].

The existing standard rehabilitation programs for people with various brain injuries are not adapted to the individual needs of patients after cranio-cerebral trauma, and regardless of possible improvements obtained with respect to several parameters (especially motor parameters) they do not allow for an increase in the quality of life. This is due to the fact that the patient is a passive object of the interactions of a physiotherapist and is devoid of his own voice in the process of his own treatment, something which is also emphasised by other authors [1,40].

A rehabilitation program aimed at the execution of individual goals, controlled by a strategic plan, in collaboration with the patient treated subjectively is more effective in improving the quality of life, since the patient at hisown discretion is responsible for the execution of individual goals. Objective progress achieved due to individual treatments is reflected in the subjective assessment of quality of life by the patient.

The benefits of the introduction into clinical practice of a strategic plan include not only the psychosocial parameters, but also physiological and motor parameters. The program is worth recommending for treatment and improvement of patients after cranio-cerebral injuries.

Conclusions

The obtained results allow one to formulate the following conclusions: