Introduction: There is recent interest in applying the principles of practice in Palliative Care (PC) to neurological pathologies, which can often be chronic, progressive and disabling, as they compromise functionality. In this scenario, the functionality assessment of home cared patients can be useful to guide care elaboration and to observe clinical evolution. The aim of this study was to trace the functional profile of palliative neurological patients in a home care service.

Methods: 112 patients were assessed through a questionnaire containing sociodemographic and clinical data and two validated instruments for functionality, the Functional Independence Measure (FIM) and the Palliative Performance Scale (PPS). The correlation between dimensions of interest from the two instruments was analyzed, as well as the relation between sociodemographic and clinical data and the functionality scores.

Results: The neurological pathologies that most frequently led patients to PC were cerebrovascular diseases, dementia and central degenerative diseases, largely associated with the presence of comorbidities. Both scales applied indicated significant functional impairment in this population, and correlation between the scales was high.

Conclusion: The low levels of functionality suggest that functional independence is impaired by neurological affection. Both instruments used can be applicable to the assessment of functionality, even complementary to each other, contributing to outlining better behaviors aimed at this audience, and therefore, carrying out interventions that can bring better quality of life to patients.

Neurology, Palliative care, Functionality, Physical therapy

da Silva MC, dos Santos DG, Nascimento B, Kopczynski MC (2022) Identification of the Functionality Profile of Palliative Neurological Patients in a Home Care Program. J Neurol Transl Neurosci 7(1): 1089.

PC: Palliative care, FIM: Functional Independence Measure, PPS: Palliative Performance Scale, WHO: World Health Organization, ALS: Amyotrophic Lateral Sclerosis, MD: Muscular Dystrophies, MG: Myasthenia Gravis, MS: Multiple Sclerosis, PD: Parkinson’s Disease, STP: Singular Therapeutic Plan, ADL: Activities of daily living, DM: Diabetes mellitus, SAH: Systemic arterial hypertension, HIV: human immunodeficiency virus.

During the last few centuries, access to health services and technological advances in health have been responsible for improvements in population’s conditions and quality of life, modifying the morbidity and mortality profile and characterizing an epidemiological transition (1). Therefore, extension of life was made possible in different ways and a new model of care was built during the final moments of life: a monitored and controlled one (2).

According to World Health Organization (WHO), palliative care (PC) is a humanized therapy for the care of patients, whose disease does not respond to curative treatment, aiming to promote quality of life and minimize suffering in the face of challenges related to certain conditions (3). It is an approach to conditions with limited survival, which can occur isolated from or in parallel with conventional and life-prolonging therapies (4).

Despite the initial prominence in the treatment of patients with terminal cancer, PC has shown to be appropriate for other advanced, progressive or resulting from multiple comorbidities clinical conditions (5), and, even though there is little in the literature on the subject, there is also recent interest in applying the principles of PC to neurology, since this area includes chronic and/or progressive, limiting and disabling diseases, such as Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophies (MD), Myasthenia Gravis (MG), Multiple Sclerosis (MS), Parkinson’s Disease (PD), Dementia, among others (6).

Considering the concept of PC and its focus on quality of life, current health policies and practices emphasize the importance of home care, so that the patient finds comfortable environment with the family and autonomy regarding the choice of place of death, in addition to reducing the risk of comorbidities related to prolonged hospital stays (7). Since the patients may be at home, it is important to carefully evaluate them in order to identify their needs and guide the elaboration of a therapeutic scheme or even the Singular Therapeutic Plan (STP), an instrument used in public health in Brazil that integrates actions of different natures which constitute the patients’ approach (1).

Physical therapy plays a fundamental role in promotion, improvement and adaptation of the individual’s physical conditions, and its field of action is directly related to the enhancement of functionality, which consists of the ability to perform activities of daily living (ADL), which depend on motor, cognitive and sensory conditions, communication and autonomy, among other biopsychosocial factors (8). The decline in functionality, in addition to configuring the most varied degrees of dependence and generating suffering(1), is one of the few possibly modifiable factors strongly related to high risk of mortality (9). Hence, functional assessment is also essential in PC for the disease progression surveillance, prognosis prediction and terminality diagnosis (10).

Therefore, analyzing the sensitivity of instruments such as scales in the face of prognostic factors, together with profile identification for this population of patients, may result in better therapeutic practices that culminate in the enhancement of their quality of life, justifying the development of this study.

Objective

To identify the level of functionality of palliative neurological patients treated at home by the public health service in the city of Itatiba (São Paulo, Brazil), as well as to verify possible relationships between the level of functionality and other clinical data.

Cross-sectional observational study, carried out in home care sectors of public health service in the city of Itatiba - SP, from May to August 2020. It was approved by the ethic committee and research of the Sociedade Beneficente Israelita Brasileira Hospital Albert Einstein, São Paulo, Brazil (approval 3.999.574). All participants provided written informed consent prior to begin the study. Sample was defined by convenience and consisted of patients registered with home palliative care in the services’ internal information system. Inclusion criterion used was to be over 18 years old and to have a caregiver, present at the moment of assessment, capable of understanding and correctly answering the application of the questionnaires.

Data collection was performed by applying a questionnaire for sociodemographic and clinical data and two validated instruments for assessing functionality: the Functional Independence Measure (FIM) (11), aimed at assessing functionality in general, and the Palliative Performance Scale (PPS) (12), specifically developed to verify the level of function in PC patients.

The questionnaire and the selected instruments were applied during home visits, being answered by the patients themselves when they had cognitive and communication skills preserved, or by their caregivers. This was the form of application chosen considering the excellent agreement of observations on functional capacity perceived by caregivers and health professionals, according to literature analyses (13).

Dimensions of FIM and PPS that addressed similar functions were selected, and the relationship between them was verified by Spearman’s correlation (14). Relationship between sociodemographic and clinical variables with the scores of the scales’ dimensions of interest was verified through simple generalized models with Gamma or Tweedie distribution (15). Independent variables that presented p-value <0.20 in single analysis were included in multiple analyses. The results were presented by mean ratios, 95% confidence intervals and p values, having been analyzed using the Statistical Package for the Social Sciences (SPSS) (16) and considering a significance level of 5% 

132 medical records were collected, and after verifying deaths, refusals and ineligibility, the final sample totaled 112 patients. Table 1

presents the descriptive results according to sociodemographic, clinical and care variables, while Figure 1 presents the main clinical diagnoses (Table 1).

Although a considerable part of the studied population received at least medical, nursing and physiotherapeutic care, it was found that the visits mostly occur sporadically. Physiotherapeutic care is the most frequent among patients. Even so, only 29.46% of them are attended weekly or biweekly in this area. For other professionals, this number is even lower: 26.79% of patients receive nursing care and 15.18% receive medical care more than once a month (Figure 1).

Figure 1: Main clinical diagnoses.

Since the insertion of patients in PC may result from multiple associated comorbidities, the additional pathologies that these patients presented were also recorded. Only 21.43% of the patients did not present any comorbidity, while 36.61% had only one, 26.79% two and 15.18% three or four associated pathologies. The most frequent comorbidities were non-progressive chronic diseases, such as: diabetes mellitus (DM) and systemic arterial hypertension (SAH) - (32.14%), respiratory and cardiac diseases (23.21%), other pathologies of neurological origin (20.54%) and orthopedic conditions (16.96%). Other results found, in less expressive proportions, were the presence of human immunodeficiency virus (HIV), drug addiction, recurrent urinary tract infections, pressure tissue injuries, tumors in other systems and malnutrition.

Dysfunctional diagnoses, in the questionnaire, could be recorded concomitantly with each other. The most frequent were paresis and plegias (49.11%), minimal general mobility due to immobility syndrome, locked-in syndrome or persistent vegetative state (42.85%), bradykinesia and akinesia (20.54%) and pulmonary dysfunctions such as dyspnea, hypoventilation and airway hypersecretibility (19.64%). Less frequently, motor coordination disorders, cognitive and behavioral changes, aphasia and other motor control disorders were identified.

Table 2

presents the results for the application of FIM and PPS. For the FIM, the scores are presented for each item, each dimension (physical and cognitive) and in total; the last two also presented in adjusted scales from 1 to 100, in order to be easily compared to PPS scores (Table 2).

Spearman’s correlation analysis was performed between PPS’s Self-care dimension and the items Eating, Grooming, Bathing, Dressing upper and lower body and Toiletting of FIM, as well as between PPS’s Ambulation dimension and the items Walking/Wheelchair and Stairs of FIM, given the similarity between the activities evaluated by these domains. All tested correlations proved to be significant, correlation coefficients being positive, with r≥0.780 and p value<0.001, indicating high correlation between the assessments performed by the two instruments (17).

After simple analysis, it was decided to include in the multiple model the score for FIM’s Motor Component, for which the sociodemographic and clinical variables that had p-value>0.2 were selected as predicted variables, these being the main diagnosis and the dysfunctional diagnoses being paresis/ plegias, motor coordination disorders, minimal general mobility, bradykinesia/akinesia, pulmonary dysfunctions and aphasia. For the Cognitive Component score, the main diagnosis and the dysfunctional diagnoses bradykinesia/akinesia, pulmonary dysfunctions and aphasia were selected as predicted variables.

Similarly, after analysis by simple models, it was decided to include in the multiple model with PPS’s Ambulation score as predicted variables, the variables region of residence, main diagnosis and the dysfunctional diagnoses paresis/plegias, motor coordination disorders, minimal general mobility, bradykinesia/ akinesia, and aphasia. These same sociodemographic and clinical variables were used in the model that took Self-care dimension as predicted variable.

The adjusted multiple model underwent a process of individual selection of variables, keeping only those with Wald statistic p-value <0.05, indicating that they remain associated to the outcome in each group of variables. The data obtained for the most prevalent category in the sample were taken as a reference. The results of the final models obtained for the scales’ dimensions of interest are found in Tables 3 and 4.

The studied population’s sociodemographic and clinical profile indicates that neurological pathologies, whose incidence has increased worldwide in recent years, equally affect both sexes (18) and can be found in different age groups, commonly in the form of strokes and dementia in older individuals (19) and traumatic injuries such as spinal cord and cranioencephalic injuries among younger populations (20). Older age groups, however, are more frequently affected, possibly due to the increase in general life expectancy and also to some relationship with chronic diseases such as DM and SAH (18). The most observed pathologies in this study’s sample are in line with those for which guidelines for PC indication already exist in neurology, like stroke, dementia and other diseases such as ALS, PD, MD and MG, as well as the interaction of multiple comorbidities (5).

It is noteworthy that the vast majority of patients evaluated in this study have been diagnosed for 1 to 10 years at the time of evaluation, similarly to pathologies such as dementia, which are described in the literature as cases that present in a chronic form with progressively greater functional decline over the years (21).

The assessed patients receive multiprofessional home care, the vast majority having access, at least, to professionals in medicine, nursing and physical therapy. The frequency they are visited by the professionals, however, is low, with most patients receiving only monthly or sporadic care, which probably configures a character of care aimed at guiding conducts and care. Home guidance programs have been described in the literature as having an impact on minimizing installation of negative patterns in neurological conditions, as well as on facilitating ADL, environmental adaptation and continuity of the therapeutic work performed (22). Health professionals, however, describe a perception of resistance and family difficulty in accepting and following guidance from multidisciplinary teams due to caregivers’ biopsychosocial issues (23). Thus, the real effectiveness of infrequent assistance programs with high dependence on guidance schemes in more clinically compromised populations is questionable.

In functionality assessment, it is noted that there were no subjects who reached the total scores in almost all FIM’s selfcare, mobility and locomotion dimensions and PPS’s ambulation, activity and evidence of the disease and self-care, all of them more related to physical abilities. This indicates considerable functional impairment of the studied population by neurological diseases and the their derived disorders, which may include reduced muscle strength, stiffness and spasticity, loss of joint mobility, diffuse pain and sensory deficits, for example (24). The scores obtained in the present study raise awareness for the fact that they are not only low, but also considerably lower than those found in other studies carried out with patients with the same pathologies, but who were not in PC (25). It is suggested that functional status may be a factor inversely related to the level of palliative care provided to the detriment of curative treatment for patients with neurological diseases that, by themselves, would not necessarily shorten life, such as stroke.

Regarding the relationship between functionality and the sample’s characteristics, it was observed that, in general, patients diagnosed with cerebrovascular diseases, traumatic brain injury, dementia and brain tumors are related to lower levels of function, as well as patients who reside in rural areas.

It is possible that both the low percentage of individuals in the sample living in rural areas and their greater functional impairment compared to urban residents are related, as already known in the literature, to the lower ease of access to health, especially for patients in PC. However, this lack of access is due to the restriction of supply and structure (shortage of professionals and problems related to transport) and sociodemographic factors (population’s economic stagnation and high rates of chronic diseases), which makes it difficult for the State to cover all demands in distant regions (26-27).

In the present study, it was possible to observe sociodemographic and clinical characteristics of individuals undergoing PC due to neurological diseases, as well as to trace their functional profile and conjecture conceivable relationships between them. However, not only for this reason the functional assessment is important, but also for its potential to predict future disabilities, institutionalization and even mortality (28). As the FIM and the PPS proved to be correlated, they could be used in a complementary way in the evaluation, which can be extremely significant in the palliative neurological patients’ follow-up, since most of these individuals tend to face a long period living with the disease and experiencing gradual functional decline (21).

Patients undergoing home Palliative Care for neurological disease must have their functionality constantly evaluated, since it can contribute to the disease’s evolutionary surveillance and guide possible actions and guidance for the multiprofessional team. The two instruments used in the present study, FIM and PPS, proved to be adequate for such an assessment, covering several components of functionality – FIM being more detailed and PPS more succinct. The instruments also showed high correlation between themselves, suggesting good applicability of the scales in a complementary way.

The studied population showed low levels of functionality in almost all dimensions assessed by the instruments, suggesting that functional independence is directly and negatively impacted by the sequelae caused by neurological disorders, whether physical, cognitive, behavioral or communicative.

As limitations, sample size and the study being performed in a single municipality’s health system stand out. Therefore, it is suggested that future studies are carried out with larger populations, preferably multicentric, comparing the results obtained and considering a possible relationship with the characteristics of different levels of health care. Furthermore, it would be feasible to compare the levels of functionality in patients receiving Palliative Care for neurological disease with those who receive it for diseases originating in other systems.

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